Family Living with Rare Genetic Condition (My Perfect Family: Friedriechs Ataxia)
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- เผยแพร่เมื่อ 28 ส.ค. 2020
- Joe Boon is turning 30. It’s a milestone for anyone, but particularly for Joe and his family, who carry a rare genetic and degenerative condition that carries a life expectancy of just 37. Three out of five siblings - including Joe - have Friedreich's Ataxia, which gradually attacks the neuromuscular system. Not diagnosed until their teens and early 20s, the family have battled to cope with the implications of the disease - each one handling it differently.
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Props to the doggies, for the physical and emotional support that they give.
He’s a Service Dog
Assistance Dog Journey duh
Get the shoes get the shoes yeah!
Are you trying to understand the difficulties or just think you are smart. The dog is a service dog. The dogs love what they do. It takes a lot of courage for a human to use one and continue the lifelong training required. That dog is much smarter than you seem to be. Your remark is very condescending.
@@kathybell4719 me or the other guy?
It feels like Therese is suffering the worst out of the three, at least emotionally and mentally. She's very hard on herself. Really feel for her, especially in the workplace. She deserves better than minimum wage, especially after working there for 5 years like jfc. We disabled people aren't just there to fill your quota for having a disabled person on staff.
You have to ask for raises, bosses never just give them. Women often get paid less because we ask for less and we suck at negotiating. Her lack of self confidence is what's holding her back. She should practice with someone on how to ask for a raise and then go for it. I'm assuming her work is up to scratch, if it's not then maybe it might be an issue, she seemed to lack confidence about her writing too.
@@janejan9728 lol. (internalized) misogyny and ableism go brrrr. big offence but unless you're physically disabled urself and understand the hoops and mountains we have to jump through and over on a daily basis just to be seen as human, then you'd understand why its harder for someone w/ a disability to approach a non-disabled boss abt something as important as a raise from minimum wage. and if u are physically disabled and are still out here spouting stuff like this then maybe take a moment to go and connect with disability advocates and gain some empathy.
@@azkainer4204 Businesses are about making money. Either you're productive at work or you're not. Raises aren't participation trophies because jobs are vehicles of wealth creation. The very same wealth that pays your disability benefits. Society requires a productive workforce for that reason.
If you are physically unable to do something, then that's fine, you can get disability benefits, because productivity in our society is incentivized allowing for surplus wealth and welfare programs . But don't expect to be given merit rewards if you can not earn them.
Showing up at work is not a reason for a raise. Either she grows some balls and goes in there and proves her worthiness of the raise just like everybody else, or she stays on minimum wage. Her choice.
It's a slap in the face for her It's as if she's being told... 'well you're disabled.. what do you expect'.
Disgraceful.. no wonder she feels the way she does!
Let’s hope this video shows some good positive changes for Therese🤟
Imagine receiving papers from a dog at the office, that would make my day so much better
Honestly so true
I'm a teacher at a small alternative school. Our principal had her dog certified as a therapy dog. He comes to school 3 days a week. He's so good for the morale!
I cannot imagine why anyone wouldn't love to be friends with Rezie. She seems fabulous and deserves way more than she thinks she does.
She is such a beauty .. right??... 🥰🥰🥰
My oldest brother was diagnosed with this when he was about 8. He lived before the Disabilities act so had to quit school when he was in 8th grade because it was a 3 story building without an elevator and the school didn't provide tutors either. He would read a lot and he and my dad played a lot of chess. He got the flu and died at 25 years of age. I wish he could have lived in the computer age, he could have finished school at least. He was the oldest of 5 and was the only one that had this.
So sorry to hear this. May I ask what year your brother died?
@@thihal123 he died in 1972.
Carolyn Hight , thanks for responding. Wow, such a long time so. So sorry. Time does pass by fast, doesn’t it? My mum passed away 10 years ago. It feels like a lifetime away.
I'm sorry for your loss and hope you find comfort in happy memories.
My daughter was recently diagnosed with this disease, she is 17 years old and I'm trying to be good for her and because I am a mother of 5 children and my 3rd son who is 10 years old is presenting some of the symptoms.
"I could no more hate it than hate myself." Powerful words. Prayers for this family.
My mum also suffers from Friedreichs Ataxia, she has been diagnosed for some years now, in her 40s still going strong and is my absolute world. Everything in this documentary has hit home on such a personal level and i am so damn happy this is a thing. I wish nothing but the best for this family, the struggles are truly real for something so uncommon.
Big love to you all and keep fighting 💜
Frankie Grime Please turn to Jesus He loves you very much, i was ill for many years but the doctors couldn't really help me, i don't blame them, there was only so much that they could of done for me, Then Jesus gave me a miracle and healed me, He is the God of miracles, God has done amazing things in my life and in the life's of people i know, He can do the same for you and yours, When you need Him call on Him, He is the God of comfort and will there for you when you call on Him, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, God saved someone i love from an illness leading to death, There is nothing impossible to God, It's as simple as asking Jesus into your heart and life to be your personal Lord and Saviour, confess your sins to Jesus, and Jesus will for give you, If you truly seek Him, Jesus will answer you, i know this because He answered me when i called out to Him
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I want to be friends with Therese. She seems kind and smart and lovely and I want to give her a hug.
Same❤
I was born into a family with disability. I don’t see that as a problem but a window of opportunity to adapt, respect, love & be grateful for.
As a service dog handler and trainer here in the US, I was both delighted and relieved to see that your family has service dogs to help you remain independent. I myself got a service dog when my then pet saved my life and became my first service dog. I know the difference that these dogs make in your life. May you and your family ( 2 legged and 4 legged) live long, happy lives together. You have a lovely family. In my experience, families that live with disabilities are closer. I just wish it didn’t take a life threatening disability to make families realize just how important we are to each other; and to spend more “quality” time with each other.
Good luck to all of them, but I especially hope that Therese finds more fulfilment and happiness.
What a loving ❤ beautiful family 👪 ♡♡♡♡
Wow!! Not only are they an amazing and beautiful family.. they are also inspirational!
I would love to see a TV series about them instead of some of the "celebrity" rubbish that's on. Can you imagine how many people they would inspire?
I have painful conditions and now I feel I want to be as productive as those 3 brilliant people 😊
They are beautiful inside and out. Very interesting, very loving.
I agree! This family is so inspiring, interesting,nice and loving. You want to follow their journey and cheer them on. Theresa is so pretty and sweet she just hasn't found the right guy yet. She will i feel. I was very taken by all the people in this family. I wish they had a show so you could follow them. Perhaps more videos of them. You all have so much charisma going for you. Good luck.
Love “trash” Island🤣🙄🤷🏻♂️
I would not like to think of what an intrusion into their lives becoming famous would do to them as individuals and as a family. Honestly They have enough on their plates and doing beautifully loving and supporting one another. They are AMAZING people who are living their lives with deep family love and support. Watching this video is inspiring and it's easy to fall in love with them. But they are not characters playing a part. Unless they decide unanimously to look for fame, I'd say don't intrude into their lives. Let them go on and respect their privacy.
YEEEESSS! Absolutely! This is one the goals for my nonprofit organization...to give others something more inspiring to watch instead of celebrities behaving badly and who's sleeping with who dramas. So many people can truly be inspired and informed!
Minimum wage for an office admin? That's BS she should totally get paid more! Therese seems like a lovely person and I feel sorry for anyone who doesn't take the time to get to know her.
It makes me angry to hear that she’s been in a job for 5.5yrs with NO raise 😡. That’s beyond unethical!!!! An office admin especially should not be making minimum wage. Here in Canada, an office admin makes usually around $20+hr CAD, and often way more, like $25+. Minimum wage is around $12-$15/hr so office admins make quite a bit more. You’d think a country like Australia would treat their skilled workers similarly & pay them accordingly.
@@sarahb7795 Just flagging that this family lives in New Zealand (not Australia) where the minimum wage is $18.90. Totally agree she deserves a raise but the going rate for office work in NZ may be minimum wage.
jiltz44 my mistake. I really hope it’s not minimum wage... Office people are a necessary part of any business and they deserve to be paid fairly.
Office admins on minimum wage is pretty common in the UK.
In the USA its legal to pay someone below minimum wage if they have a mental disability, which is total BS if u ask me.
I have a genetic, hereditary neurological disease too that affects my muscles as well and I’m having a really hard time coping. I’m “De Novo”, so I’m the only one who has it in my family. I’m only 31 and I was diagnosed two years ago. It’s really difficult to accept. Mine hasn’t progressed as fast as theirs in terms of how theirs affects them at 30, but mine has came out of nowhere pretty much. I was fine (“normal”) until a car accident 4 years ago, and then my disease just hit me like a ton of bricks. I am angry that someone hit me because my disease would of likely progressed super slowly without the accident. These types of diseases really mess with your head. It is really depressing and I do try to find silver linings, but it’s hard. I can relate to quite a bit of what they’re dealing with, except mine is mostly* an invisible disease, and it causes a lot of pain. I would rather it not be invisible so that people understand more. There’s a lot of bias when it comes to invisible disabilities, and I wish people could see or feel exactly what is wrong with me so they are more understanding.
Hi Sarah, hope you're having a good day. I can understand how difficult all of this must have been for you. Life's so unpredictable, that's for sure. But I hope that you feel better because things get better no matter how bad they are. I hope you cope with the emotions and all the changes and feel at peace and in joy again. It's possible! Sending you a lot of love and a nice hug.
Do you have a service dog?
Sarah...If I could say or do something that would make you feel better, Lord knows I would but, I am far, far, far from you (Arizona) but, if you ever need to vent, talk, cry away from your family or social circle, this complete stranger can and will be there for you. Please do your best to at least be well !
Hope they find a cure for what you have, Sarah. The internet is rooting for you 💜
Sarah B totally relate to invisible illnesses, I have them as well. No one truly gets it unless they live it. I was also hit by a truck in my car and have never recovered from that. I totally relate to your experience there as well. I was almost killed in routine surgery too. The hits keep coming for us it seems. So infuriating and exhausting. Be kind and gentle to yourself in this journey snd know you are a strong person.
I have a Genetic Conditions that comes with 2 "comorbities"
Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, and Postural Orthostatic Tachycardia.
I so rarely hear of people who have Friedreich's ataxia. My cousin had FA, he was just the most wonderful man. He was adopted and we didn't know much about his birth family, it took a long time to diagnosis him. I wish all these people the best lives.
💖💖💖
It unfortunately does take a long time for most ppl to get a diagnosis because drs just aren't trained or educated to recognize "RARE" conditions. I honestly think that'sthe hardest part not knowing not getting answers because then drs ands others look at you and treat you like tiger either making it up for attention or to get meds or to have an excuse to "be lazy" or that your "crazy" it's all in your head or it's just anxiety. That's so hurtful and frustrating especially when you know damn well that none of that is true and your already suffering physically which can affect you mentally emotionally and spiritually and your trying so hard to stay strong and fight through when being treated that way while already not having the right support or a diagnosis to get proper treatments going thru suffering torment pain in every way not knowing why and not being able to live the way a "normal" person does with the disability symptoms getting in the way having a hard time getting others to help because they don't understand that what your going thru is real and really do need the help doing things you physically can not do no matter how hard you try and not getting ppl to understand what your going thru ands why your mind state or personality has changed because they aren't feeling your suffering they can't understand or relate. It's so hard to deal with. But I at least with a diagnosis your finally believed, finally not being treated like a liar lazy or crazy person and start getting there treatment , care and help you need. Society in whole needs to be more aware of these issues because soooo many ppl are suffering from these conditions some invisible illness that others cannot see going on in that person but doesn't mean it's not true. And there drs need better education and training especially the emergency room. Because when someone with an un diagnosed illness is in the process of trying to get a diagnosis but hasn't gotten any results yet, in there meantime they have some kind of medical crisis because of the illness so have no choice but to call the squad because they can't drive may be alone at the time and need medical intervention but then get treated terribly by EMS workers and then treated bad by the hospital staff and drs and no kind of tests being done not even tests that can be done at the emergency room because everyone is judging the person wrong because they look at that person's medical charts and see they've been in and out of drs, specialist and hospital and have had to call the squad multiple times thru the years so then they assume the person is lying and they do NOTHING to care for them they assume the patient is dr shopping for meds or have mental illness making it up for attention e.t.c so even tho they take urine and blood and test it for drugs and alcohol and see it's negative they still don't believe the patient and treat them like a druggie and or a crazy person that just has bad depression/anxiety or somataform disorder etc e.t.c so they tell them see a psych dr even tho they have been informed that the person already is being seen by one because drs referred them previously and they are dealing with depression and anxiety due to all that's involved with the illness and not being treated supported or believed. They can see in the patient files that they've not been diagnosed with any serious mental illness but yet the er dr pink slips the patient does no tests to check their physical health and throws them into a small cold empty room with just a bed and a paper thin nightgown takes everything from them doesn't let them use a phone doesn't ring them any medications they are already prescribed for other illnesses they have been diagnosed with like bile duct disease or autism immune arthritis gastrointestinal problems e.t.c they don't monitor their heart rate blood pressure temp anything their supposed to do they do nothing to make them feel comfortable or safe and don't even give them anything to help the anxiety they say the patient has , they make them keep their glass door open 24/7 where they can't rest due to all the lights ands sounds ands may be already dealing with headaches or sensory issues instead they want tti send a million ppl in and question the patient over and over about their entire life story and "what are you feelingright now" & keep saying it over and over again but yet do nothing about how that person is feeling . They only want to try to drug them up with toxic damaging anti depressants and anti psychotic medications that actually cause more damage to the brain and body that the person doesn't need and only make the person feel worse and go thru more suffering . Or they try to give the patient medications like benadryl to help their anxiety and help them sleep although it is their medical records that the patient has severe adverse reactions to the medication so when they try to force that med on the patient then there patient anxiety is raised and the try to stop the nurse from forcing it on them the patient is now being called " combative " and is then considered to be bi polar or manic or paranoid which none of these are true. So then they want to push strong psych drugs which again isn't needed helpful or fair it's only making the issue worse. So the patient again has to go thru hell to convince them of the truth that they don't need any of it they aren't mentally ill they have an undiagnosed "physical illness" and because of all the crap torment pain and suffering their going thru it's causing some depression and anxiety "at times" . But may not choose to deal with it by taking toxic drugs that they will have hard time coming off of later that could potentially cause more damage than good. Maybe the patient fights thru it in prayer and listening to worship and praise music reading their bible or other books they enjoy talking to loved ones or their "own" counselor they've been seeing for years without taking meds or maybe they meditate or do yoga take warm baths walks get massage therapy or heat therapy acupuncture etc which they have to pay for on their own out of their pockets because of not having insurance or it just not covered and it's hard to pay for these things when your ill and can't work can't get SSI or disability because of not having a diagnosis. But after several hours of being in the psych ward they discharge u because after monitoring u from the camerathey have in your room where your given no privacy is pray e.t.c they see your not crazy and they let you go with not helping you at all like they said was their intentions was to just help you to rest and relax yet as you start to fall asleep they say your discharged goodbye. So your now released with no way home because you came in a squad u can't call anyone because your phone died during all the hours you didn't have it because it was taken away from u it's the middle of the night when they decide they're not going to help you so they're going to "let you leave" but it's late so no buses maybe you have no money because you can't work and waiting on disability so now your stranded and u have no choice but to take a chance taking a ride from a stranger or having to go back in and wait on a the social as l worker to beg for a taxi token then have to wait outside uncomfortably and either in the cold or heat which u may not be dressed appropriately for not expecting to be outside being that you went to the hospital in a squad so u wait around up to hours in the elements tired from there all day and night your in pain hungry from not being fed while there and probably haven't had any meds that you already prescribed bcuz either they were left at home when u had an emergency squad come get you and the hospital didn't medicate u while u were there or maybe your out bcuz no insurance at the time e.t.c. by the time you get home you feel worse then before u went in every way physically mentally and emotionally and feel traumatized and violated by the way you've been treated when you simply just need medical help. And trying to do the right thing for yourself and loved ones because a lot of people can't handle but so much of it all the physical and emotional and emotional torment takes a toll and many give up take their own life or self medicate by using drugs. But your not trying to do that you stand on your faith trust God and seek medical care but very no where. Very sad very inhumane very oppressive. If not for the grace mercy love and healing touch from God some of us wouldn't be so strong. To anyone who has been thru this weather it's you the patient or a loved one watching a loved suffer plz remember that God will never leave you nor forsake you. He is our healer, provider, protector,great physician, a friend closer then a brother, lover of our souls, comforter, prince way peace,king of kings, lord of Lords, Most high only and only true God, most merciful, way maker, miracle worker. promise keeper, light in the darkness, the great I AM! Cry out to him he will hear you heal your broken and contrite spirit . He cares for you and will fight for u. God bless . Never give up. Love, LaShawna p.s. sorry this is long but wanted to share what I've been going thru and hope to bring hope to someone else if that's the only thing I can do in this life is help just ONE soul come to know God and find peace then I'm happy.
I really hope Therese knows she’s absolutely beautiful, I love her clothing style too. I don’t think it has anything to do with her or her disabilities, I think she just hasn’t met the right person. Many people without disabilities haven’t either! She seems lovely and like she’s struggling, I wish I could support her. I understand what she means about not fitting in, not from the point of disability but I have severe anxiety and depression stemming from rape, I also have endometriosis so both of those things mean I wont be able to have children - that’s the first time I’ve actually written that. But I feel like I’m not on the same wave length as my piers or family members, because my goals are nowhere near the same as theirs. it’s a strange place to be. I wish them all the best💖🤞 lovely family.
Wow, I am so glad this popped up in my recommendations. What a beautiful, animated and lovingly strong family. Although not fatal, I am dealing with a progressively disabling illness that also causes severe chronic pain. Because I have now had to rely so much on my wheelchair that's very difficult to maneuver (take apart, put together, pack in and out of the trunk of my car), and my intolerance to hot weather, I have had great excuses to avoid even leaving my house for the last few years. I understand the depression that comes with such losses of function and the people dropping away from your life. My mom is my rock. But she's 75 now and my fear of losing her haunts me on a daily basis. I definitely empathetically felt the loneliness Rezie was speaking of, my heart just melted for her watching this. I definitely think that between the healthy lifestyle of working out to stay as strong mentally and physically as possible along with the unbreakable support, laughter and love from such a close family will push the barriers of life expectancy back as far as possible. I won't forget this video. It has definitely touched me. I laughed at the "ataxic hug" comment Joseph made after the lovely poem Rezie wrote and read for his birthday. Without humor we would never get through the day!
Anyone complaining about the inconvenience of wearing a mask in public needs to watch these wonderful people stepping into their disabilities and living their lives with laughter and love🇹🇹🙇🏾♀️
I don't see how you can equate mask wearing with a genetic, progressive conditions.
Sandra...clapping my hands to that...😷👏👏👏
I hating wearing a mask and wont do it and yes I'm allowed to say this because I have Tonic Clonic Seizures I started having then at the age of 16
@@prismarie6049 the point is that for most of us wearing a mask is just a minor inconvenience yet there's such a vocal group of people throwing an absolute fit about it...whereas there are people like this family who have so much they deal with every day and they do so with a smile.....so maybe the rest of us should appreciate what we have and not stress all the little bullshit like having to wear a mask.
@@prismarie6049 same thing I was thinking...
What a very attractive family, especially Joseph!
I know, thata what I think, too. They are all just lovely!!!💜💜
I am a ICU and ER float nurse at a major trauma center. I do watch video's on different people's journey's with their health problems or different diseases. What struck me was not the illness but what a beautiful family you all have. I also think the three of your who are disabled are extremely talented capable people. You all have such different approaches to you shared illness yet do approach it in different way yet all support and love each other. I would love to be part of a family like yours. Theresa I could feel your saddness at times when you spoke. I don't understand how it feels to be living with Friedreichs Ataxia but I do have a chronic illness as well and have now become disabled and I did pass it to two out of my three kids. As a parent it is hard to see your kids suffer at a younger age what I know to be very painful and also depressing. My two kids have struggled with that as well as myself. I no longer suffer with it due to daily meditations and a spiritual awakening. My kids still struggle alot with it although. I may still have bad days with my body but I don't let it get to me anymore. I am exactly where I am meant to be and try my best. I loved how the video started with Jon saying Friedreich's ataxia is in my cells and is part of what makes up me so I have to love what is me. Something to that effect. Just an amazing family and I wish you much love and happiness. Thanks for sharing with us.
8❤❤❤❤❤
I so admire this whole family. I really wish Therese the best and pray that she finds happiness and fulfilment, as she certainly deserves it.
Dear Lord that is one gorgeous family! They all have the most brilliant eyes and giant smiles!!
What a wonderful family, having to cope with such a complicated situation but being so close and supportive
They do not give up and their attitude is fantastic. I wish each of them a happy life. You can see and "feel" the love the entire family has for each other.
Therese seems like a very interesting and honest person. I love that she writes poetry.
Therese is so cool and so compassionate. I’m disabled and have Ehlers danlos syndrome, Lyme, Mast cell activation syndrome, dysautonomia, Endometriosis, hypothyroidism, and probably more I don’t even know about yet. I just want to say, it sucks being isolated (I live that way too) and if you see this Therese, I’d love to be friends & swap art/poetry/etc. ❤️🙏🥺
I'm so sorry that you experience a range of conditions. I also have EDS and dysautonomia. Occasionally I have mast cell-type reaction but I'm lucky that they're mild and I haven't been diagnosed with MCAS. The way you said "and probably more I don't even know about yet" really embodies the experience of having chronic conditions and not knowing what half of your symptoms are caused by. I hope you're doing well. Gentle hugs! :)
I hope both of you are doing well
What a perfectly beautiful family-especially Therese. I can relate to you in a lot of ways, Therese. I want you to know that you're not alone. I don't know if you'll ever see this, but if you need to talk to someone, please let me know. Sometimes talking to a stranger can really help. I also want you to know that you ARE good enough, girl. In fact, you're MUCH better than 99% of the people in the world. The problem isn't you, it's that there aren't enough decent and trustworthy men. I'm sure if you really want a relationship, you will have one, though. You're beautiful, talented, and intelligent...everything a good man would love. In the meantime, just know that being single isn't such a bad thing, either. I very much prefer it to the fighting and drama in my previous relationships. (I wasted nearly 15 years of my life in one.) I'm far more content and comfortable now.
Please stay strong, hun, and if you ever need anyone to listen, please get in touch with me. Sending best wishes to you and everyone else in your family. You're blessed to be surrounded by so much love. 💜
This is utterly heart breaking. Joe has such an interesting personality. What a cutie!
I found it to be heartwarming ❤ I see love. I see character. I see determination. I see togetherness - that I rarely see elsewhere. God bless them all ✝
It’s not, it’s reality. Disability is not heartbreaking.
@@blumberg1982 I hate to see anyone suffer
Thank you for talking about severe depression. You're right, it's good to have a goal in which to rally back to some degree. Plus, having people who love you and check on you is vital.
Joe's birthday party brought tears of love to my eyes. God Bless this family!
Teray (I'm sorry if the name is incorrect) but my heart hurt for the sister. There is nothing wrong with you my dear, you just haven't met the right man yet he has to be perfect for you, you are a beautiful young woman who sparkles when you smile. I understand the stigma associated with disability in the work place. You and your family are in my thoughts. Be you darling .....
💯
I can relate to her so much having a similar disability and going thru so many of the same things as her and the same feelings e.t.c. God and my mom & fam has kept me going. Also gaining inspiration from ppl like this family showing their strength and motivation and reading comments like yours also lifts up ppl in our situation God bless you for sharing your love with others.
I am so glad you made this informative piece and so inspired by your beautiful family. I was diagnosed with FA 9yrs ago and I relate to Therese especially. Sending my appreciation and clumsy love to you all! ❤️
Amen on the depression explanation!!!!!! I personally call it situational depression. I have never suffered from depression until I was diagnosed with full body CRPS which is a nervous system disorder that causes me severe pain and I am losing the movement in my joints as well. It feels like someone starting me on fire, electrocuting me and crushing me at the same time. While my ability to stay upright decreases, my mobility and the ability to to move my joints decreases from pain and from lack of using my muscle that have caused me to become quite weak. My muscles have atrophied. I can’t stand at a counter for 5 minutes because of the pain it puts on my lower back, which in return caused cyatica and excruciating pain. Even my scalp burns causing me great difficulties brushing my hair and water from a shower coming down on me feels like damn razor 🪒 blades!!!!
This disease gets better or goes away and my depression would do the same. It stole my nursing career from me, my very active life and my friends as well as some family (that have a hard time watching me get worse over time) sorry guys I have no control of it unfortunately!!!❤️❤️❤️❤️❤️❤️
Happy birthday Joe, watching you all from Kenya 🇰🇪😍God bless your family 😘
What a beautiful family. They are so close and it shows how much love they have for each other.
BEAUTIFUL! Lovely Perfect family. They come together as a family and live life 100% supporting each other. Every one of them is unique, talented and amazing! Love to all from VT, USA
Ataxia runs in my family, my grandmother (Mammar) has got it and surprisingly my mammar is still a live at 78. I think it is all because of my grandad looking after her. She can't eat or drink now and is PEG fed, can't really breath very well, finds it hard to open her eyes because of the muscle use, can't walk or talk and her mind is gone, obviously because that's a muscle also. Not really a life to live as she just sits in a chair all day not able to do anything, but my Grandad just keeps her going. I've helped care for her since I was about 8 when she got really bad. All the rest of my family who had it died quite young. If you want to read about it more have a look at ATAXIA UK, and maybe donate some money towards research. That would be great :) Hopefully I don't get it or am a carrier of it, but I never chose to be tested.
Glad Kennedy made it and glad you were able to have another child as well.
It is heartbreaking to hear Theresa and the others speak. You can feel their pain that stems from some of the isolation resulting from this debilitating condition. I hope that within their lifetime truly effective treatments and even a cure will be developed (CRISPR comes to mind). I also really wish for Theresa to find someone loving. Someone who values her for who she is. Her artistic skills and works make the world a brighter place.
I have struggled with depression myself in part due to the loss of my parents when I was in my mid 20s, so I know the value of mental health. With the help of a counselor, neurologist and heavy exercise I have been able to manage the feelings of hopelessness. We all die of course, but to know that one's lifespan, in this case late 30s, puts things into a different light.
They are truly an inspiration and it really puts one's own problems into perspective
Christian O. Holz What a patronising comment. Its NOT heartbreaking to hear them speak. Its amazing that they can and so articulately too. You absolutely can not feel their pain you will have no idea of their pain unless you suffer from this yourself.
Hugs! I have PPMS and have been progressing at a consistent and relatively quick rate. The constant need to grieve loss of ability and relearn everyday tasks is exhausting and frustrating. Most others just don’t understand. Thank you for doing this video, although we don’t share the same diagnosis...I feel I’m less alone as I can relate with you. Hugs again.
Just keep
Focusing on the change and adaption that must be done and not on the grief. I’ve been losing ability since I was little due to a degenerative neuromuscular disease. I find that I almost have to ignore the loss and difficulty in order to cope and not think about it. It is sooooooo tough to work through and around what needs to be done, but you can do it. God has really given me strength, and He’s blown those doctors away with how far I’ve come into adulthood at 41, now. I’ll be praying for you. Just know that I understand. My whole body is afffected. I also have myoclonic seizures and painful Dystonia with mine along with Addison’s Disease and a now paralyzed stomach which doesn’t work properly to digest food. One hand works and the other doesn’t. One leg walks properly the other often drags. I shake constantly etc.... However, I am living as fully as I can and cherish my days of life. I still love life despite how very hard it is. There are so many lovely things even in the midst of the traumatic. Lots of prayers for you in Jesus name.
I cried but really encouraged by their not giving up attitude and love for each other... may GOD strengthen you all
What a beautiful, strong family.
this is crazy i’m a caregiver for a women w FA- her older brother also has it too. they definitely arent as independent as this family but interesting to see how other families cope!
she’s such a beautiful girl 😥Im sad she feels that way 💔 Bless them
I admire how positive and grounded and tight they all are, despite of the great challenges they face.. And Therese... you are SO SPECIAL! NEVER think you are any less then your sisters or any other woman as far as that is concerned!! God bless this beautiful family! 🕊💜🙏🏻
It's heartbreaking to see this affect a family in such a large capacity. I will say I very much like that these folks have workout routines. I have a mental health disability & beyond what this can do for your body when you have a physical disability it is extremely helpful for depression & mental health problems as well. The brain body connection is often underrated.
Such a beautiful family. They drew close to one another. As it should be with us all.
I could really listen to more about this family so honest and real and I also think it would help other people even with different conditions come across a lovely family
Therese is the cutest, sweetest thing! It broke my heart to hear her lament about how her sisters and brothers have all had romantic relationships, yet she hadn’t. She clearly has such a kind and loving soul.
Love this channel, this is also shows the side of disability most of us forget about. The human part. This channel gives me hope for the future of people with disabilities and their families!!!
Thank you for sharing your life with others. You all have so much going for you..determination..class.... perseverance. We are so much more than our bodies. The heart, charachter and love is what makes one human and special. Wishing all of you joy and love from Florida usa.
Beautiful family through and through ,brought a few tears to my eyes when Therese feels she,s not good enough ,she is beautiful ,strong minded and i them all the best of luck for their futures
What an exceptional family! They are all so loving and resilient. Thank you so much for sharing this.
What a beautiful family. I am happy they have Service Dogs.
This Was a very moving video. Thank you very much for making this video.
I used to care for a sibling group with FA. The oldest sister passed away somewhere around 40. The second girl was my patient. Her disease had advanced beyond pathetic. Her hearing was nearly gone, her speech was unintelligible, she was incontinent, she had not walked in years, she had almost no control over any part of her, she barely had the strength to operate the joystick on her WC. She could not prepare food or feed herself. She could not do any ADL’s. Her youngest brother came to stay for a few months. He was overall self caring despite being in a WC and unable to stand. He was a lot of fun, and we flirted in a workplace banner style while I worked. I enjoyed his company. He could also understand my client, which was a huge help. Out of 8 children, these three were born with it. My client was 125 pounds, and as mentioned, she had no control nor strength. I had to scoop her out of the WC and carry her to the bed. I had a system and barely had to pivot and lie her down, but once I got pregnant for my fifth child, I could no longer lift that much weight. She was a Medicaid patient, which barely supplies basic medical needs. At the same time I worked for another woman in the same housing complex who also had FA. She had a stubborn, difficult personality. She used a sliding board to transfer to the toilet, etc. She was not able to stand. She had a manual chair and did manage to push herself about the apartment. Her tiny daughter, about 9 or 10, at the time was her main caregiver. Again, she was a welfare case, and she only received the most minimal of care. I went at night, got her on the toilet, ran down to the lady with the severe case, got her fed, ran back down to lady on toilet (45 minute process), and help with grooming and bed. She had a way of flipping herself with my push of strength, and landing in the bed. I had to pull her into place. I did some sponge bathing, etc. covered her. That’s all the time I got paid for (one hour, $6, 1994). Then I went back down to other lady who was finishing her hot tea (with a straw). Did any housework for maybe a half hour, then groomed her for the night. This may include a shampoo and curlers. I actually had to brush her teeth for her. Since she couldn’t control her mouth function, it was a challenging task. Clothing change, lift her, put her in bed. Sponge bath, night gown and blankets. Get stuff ready for morning to ease the duties of morning girl. Here I was paid for one premium hour of $6 and two regular hours of $5 (minimum wage was $5). I did this 5 nights a week. I would nurse my baby, hand her over to daddy, then head to my little job. It was sad watching these people deteriorate. They won’t get better. So far as I know, there is no treatment other than strength training. The lady who couldn’t hear or speak hardly at all was genius intelligent and funny as a crutch. She read a lot. We had to tear the pages off the binding so she could lay it flat and attempt to turn the pages with her near useless hands and arms. It was sad. Her circumstances were dreadful. I did as much as I could for her in the little time I had. I don’t know where she is, but I heard a rumor she died. The other lady died of diabetes complications when the daughter was 14. It was probably bittersweet losing her mother. She had been sole caretaker her entire life, and this woman was so incredibly difficult. Mean and stubborn, and inept at parenting. The daughter had been born into a situation not suitable for children (primary caregiver of an invalid). However I ran into her 4 years ago. She recognized me right off. She had turned out a beautiful person. She thanked me for being her mom’s best outside caregiver ever. I think I brought some stability to their lives. We had a lovely chat. I sought out her manager to express kudos and to make sure she had served our family above and beyond. I was so happy to see her. I think it’s ironic how I have know 4 people with FA when the vast majority of people have never even heard of it. Let’s pray there are more treatments available nowadays because before only pain was addressed, back in the day when you could actually get Celebrex or OxyContin. Sorry to ramble. I miss those people. That was 26 years ago already. Haven’t seen it again since this video popped in my suggested notifications.
Amazingly supportive family!
😢 beautifully bittersweet...the dear 3 siblings living with this are courageous...the dear sweet sister....hug your beautiful heart....God comfort you and show you how prescious you are ❤❤❤
Beautiful and heartbreaking at the same time. I wish them the best, they certainly deserve it! 🌹
Such a great family, going through a lot together. It’s got to be hard to be the siblings that did not get this though. I love how they support one another so well and have so many moments of joy.
Sweet family💛 Prayers for many blessed years ahead together🙏
"there are always silver linings.. There is always something good"
God bless you beautiful and how very true
I agree with Theresa you work your butt off to do tasks that others do quite naturally with ease and not that you expect recognition, you just expect credit for a job well done! I too have Ataxia, not Friedreich's so mine is a slow progression hereditary version that hasn't been pin pointed yet since there are not tests currently here in Canada to define it. Having many genetics tests it still hasn't been identified. One of the biggest challenges is that those who don't understand the disease can't comprehend the energy consumed by minimal tasks. I am one of 4 children and so far the only one identified as inheriting the disease from my father. He was (lived one month shy of his 88th birthday) one of 11 kids, he and one sister had ataxia, one brother was diagnosed with Steele richardson-olszewski syndrome. I am thankful for you posting this video as we need more people to step up and show others that we are normal behind our disease! You have a wonderful family support system and that most certainly is something many of us do not have. It is inspiring to see how each of you with different personalities are able to carry on with normal lives despite the disease. Keep on being an inspiration to the young people coming up and showing them that the disease needs to take a back seat in life if you want to be happy!
This couldn't have randomly happened to a "more suitable for the task" family. Both parents seem lovely, so do the children. I was wondering where - as a palliative care nurse - the mother received her training in New Zealand? I was thinking of going down that route job wise.
PS: Theresa, I don't live in NZ anymore, but I'd love to be pen pals regardless 💜
You're all amazing. Thank you for sharing. Needed to see this. 🥰
Beautiful family,such a positive family also. I wish everyone of y'all the best.❤️❤️
What a beautiful family! Each so talented, intelligent, and loving! I appreciate your honesty! Thank you for sharing your stories with us! God bless!
What a incredibly beautiful family they are. I'm glad they have each other.
Thankyou all for sharing your story. Therese, you have so much to offer - beautiful, smart, kind, caring just to name a few. Good things will come your way. : ) really enjoyed this. Very inspiring.
Wonderful family and Therese there is nothing wrong with you. You will find your other half in good time. Get out there and be you. Also support groups are a great way to find commonality and feel like you are a part of something bigger. God Bless your whole family 💕
A lovely family. Watching you can feel the love.
Omg I love Therese. She is so sweet, I just want to give her a big hug 😔 She deserves so many friends and so much happiness. I hope that she can see how truly beautiful she is one day, inside and out ❤
Therese- you are so smart, kind and gorgeous. I hope that you will receive and feel all the joy you deserve in the years to come!
This family, is inspiring! And I am so proud of each one of you! To the beautiful sister, who doesn’t see herself. You are a talented, incredible, kind person! Please, know this! Thank you, for sharing!
@Rachel Bivins - my maiden name was BIVINS!!! What a surprise! I was about to AMEN your comment when I had to to do a double-check when I really looked at your name to address you! And you said it best!! She is a beautiful precious soul! Just listening to her actually made me hear her heart! Blessings to all!💝💝💝💝💝💝💝
What a beautiful family! God bless them all!
One thing that stood out to me ? Was how alike they all are. Also intelligent and positive family. Enjoying this one thanks 🙏 love the beautiful dogs that support to. 👏🏻 to them to.
So many beautiful people in the video and in the comment section. Thankyou for making the video.
Also sending lots of love, happiness and strength to the family, they all seem to be fantastic. 💕
Thanks for watching!! 👐
And I think I have problems. Lord, forgive me
Beautiful people.. Caring a lot.. the family bond grew stronger.. Envier than common family full of misunderstandings and hatred in life..
Aww. Sweetie your beautiful. It’s there loss if they don’t call you it’s all your friends, that’s where the issue lays, they are the insecure ones. You have a beautiful smile and soul. Keep doing what you are doing. Someone will come along it’s there loss.
You definitely have a wonderful family dynamic and I think you are all extremely strong.
Inspiring...thank you and God bless your family.
WOW! What a Beautiful Family! Absolutely Extraordinary!
I have nothing but respect & extreme admiration for everyone in this lovely family facing the daily challenges & emotions of what they face. Having a loving & supportive family makes a big difference for anti ego through life with disabilities. I have PTSD, TBI (Traumatic Brain Injury), & hearing loss. I have my days of depression & frustration like anyone else. Yet...I push myself, readily accept challenges, and work harder to achieve milestones. 🤗🌹👍
This was a very interesting story. I didn’t know such a rare condition existed.
there are many rare conditions that aren't that well known
Probably not as rare as most think. I have a genetic disease ( known as Fabrys) that is considered by specialist's to be rare,mostly because it is misdiagnosed more often than not,usually for years.
i also have a rare genetic condition often not diagnosed till later. 1 n 2500 female have it 2% reach full term in pregnancy
I have a rare genetic condition so rare that doesn't even have a name
There are so many rare diseases that fly entirely under the radar. It’s super unfortunate because a lot of orphan diseases never get funding for research because so few people have the condition that it’s not considered worth it to do things like studies for new medications. The only publicity my condition’s ever really gotten was after Martin Shkreli hiked the price of Daraprim, and the media discovered it wasn’t the first time he’d done that with a medication.
What a beautiful family!! I love them all! Bless them all. I wish them nothing but happiness and joy!
Thanks for inspiring me because I'm also suffering from this disease Friedrich ataxia ❤️ (love from india)
❤
I love this family you all work together and use each of your strengths to help each other out
Really grateful to hear this family's stories
What a beautiful inspiring family 💙 puts my life in perspective thank u for sharing this
Such an incredibly loving, fun, supportive family. I cannot imagine getting the diagnosis buy each of you are so intelligent, loving and are living your best life. I pray God grants each of you a long, fulfilled life.
Thank you for sharing.
What a wonderful family. I wanted to reach out and give Teresa a hug! I would love to have a friend that is so kind and lovely.
Beautiful people from inside and out... loving family who really cares about each other ... the bond keep them going .... upsetting to feel what they are going through ... we often ask why but ans lies beyond our explanation ...
talented Creative Motivational great people ..... 💓💓
Therese, I want to acknowledge your struggles but also to say that you are very beautiful, are obviously very intelligent, and seem like such a chill person to be around! Stay strong and open minded and I know you will find someone who sees how much of a hidden gem you really are ❤
What a wonderful family,Rezie is beautiful inside & out,just believe in yourself you have so much going for you,with love from the U.K.💖
God bless ,you are far more in better state than many across the world
Extraordinary family.
Be strong my friends. You are all loved all over the world. Kisses and hugs from Philippines!
Heart breaking and beautiful... Blessings magnificent family ❣
Prayers for this family!
Tragic yet heroic and brave.