Life with a Friedreich's Ataxia Diagnosis | Proof Bread
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- เผยแพร่เมื่อ 18 ก.ย. 2024
- Friedreich's ataxia is a life shortening autosomal-recessive genetic disease that causes difficulty walking, a loss of sensation in the arms and legs, and impaired speech that worsens over time. It’s often paired with other systemic issues like cardio-myopathies. Diabetes, and scoliosis. Symptoms generally start between 5 and 20 years of age.
For more information on FA:
Visit: curefa.org
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Visit: / fa_ightingkiwi
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» Proof Bread is a modern throwback to a way of life that values small-scale craftsmanship, local community, and creativity. We are a small group of passionate bakers working in our garage (thanks to cottage laws) which has been converted into a micro-bakery. Everything we bake is made by hand, from the best local ingredients, with no short cuts.
#friedrichsataxia #geneticdisease #FRDA
Friedreich's ataxia is a life shortening autosomal-recessive genetic disease that causes difficulty walking, a loss of sensation in the arms and legs, and impaired speech that worsens over time. It’s often paired with other systemic issues like cardio-myopathies. Diabetes, and scoliosis. Symptoms generally start between 5 and 20 years of age.
For more information on FA:
Visit: curefa.org
Follow Keira’s story:
Visit: instagram.com/fa_ightingkiwi
» Visit us online: proofbread.com/?ref=video
» Help us build our new bakery: gf.me/u/yzr87v
» Subscribe for our latest videos: th-cam.com/channels/PYHRKEqMycep7r5kO-1org.html
» Follow us on social:
instagram.com/proofbread/
facebook.com/ProofArtisanBread/
twitter.com/proofbread
» Proof Bread is a modern throwback to a way of life that values small-scale craftsmanship, local community, and creativity. We are a small group of passionate bakers working in our garage (thanks to cottage laws) which has been converted into a micro-bakery. Everything we bake is made by hand, from the best local ingredients, with no short cuts.
#friedrichsataxia #geneticdisease #FRDA
Why don't you take Keira to Lourdes sanctuary to bath her in the miraculous water and pray God gives her healing? pl.aleteia.org/2018/02/26/lourdes-cuda-ludzkich-serc/
My grandma did ataxia research for a long while and ended up marrying a fella with the disease I love y’all channel love from Minneapolis ❤️ I also am a pastry chef. m @deejdeejdeej on insta my mommy also had ALS any insight or help I would love to offer 💪🏿💪🏿💪🏿 love to y’all man
@@tchaggbruin3805 k by s o no car mk k m k
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@@carolefowler3109 what?
Kira is so very fortunate to have such loving, bright, kind and attentive parents.
yes, indeed! I know of a close friend who has a child in a similar situation who's thinking of putting him up for adoption because she can't take it
As a parent my heart goes out to you. This is every parent's worst nightmare have your child diagnosed with an illness or a disability. All three of her parents sound like very loving parents you have a lot on your plate right now you can make it through this. Tough times don't last but tough people do.
She is in the right family. She will get all the love and attention she needs. Hugs.
I have recently been diagnosed with something similar related to an old spinal cord injury. I could not make it another day with out the love of my WIFE and family. Love and Family are everything. Your difficult times will strengthen you. Hold on tight and love each other more every day. On the bad days we will be here to give you strength. Just let us know🙏
This is heart breaking...Big hugs for each of ya.
Its so brave of Kira and of you to share your story with us all. Thank you. You are wonderful parents and role models.
Stay strong and brave! Hugs from Europe. I'm moved to tears.
So I just came across this channel yesterday..... I'm 52.... In the past 8 months... Appendix cancer...(NED currently)... Aortic thoracic aneurysm.... And right now going through covid sickness... .
So grateful for my health up to this point...... When I started watching this video, this morning. I had to drop to my knees, and started praying for this little girl, her family and success for this family.
Watching this channel brings out the best in me.... The person I want to be 24-7.... Love this family and if I ever had a reason to want to visit Arizona, Proof is it.. God bless
Bless you guys,your family is what makes the world beautiful.
I'm looking forward to Kira getting her new bike! The discomfort she describes at 13:17 may be from the angle of her foot fall and then pushing off at the same angle. She did a great job of walking that distance and for more than 15 minutes. Good on you, Kira!!!! :)
I have a heart murmmer also. I have been blessed with no side affects. I am sorry about your daughter. I will pray for her.
May God cure Kira.our hearts go to your family from all Algerians....ربي يشفيها ...امييين🙏....Be positive so that she can heal, everything is possible with god... Love you Kira💗💗
What a beautiful young lady. All the best kira from all us Australians. 🦋
If you and your family have my continued prayers.
Amen 🙏🏼 in Agreement. God Bless you and your family.
Beautiful family. I wish you many blessings for your family and new bakery. Thank you for sharing so much with us.
So glad she has a loving family. Always cheering and praying for you all.
Seriously??? Two thumbs down? That's some petty shit.
I'm sorry to hear this guys. Hope you will have the strenght to go through it with philosophy and love.
Good luck to you and your family.
So much love to all of you. You deserve all the best things in life.
Thank you for sharing your families journey. The girls are so cute. Excited for you guys ... you are dealing with all the changes in a positive way ....
Thanks for sharing
Our children are our life
Thank you for sharing with us such a personal part of your life. We are here cheering you all on! Please keep us updated!
Thank you for sharing part of your life with us. We are glad you have been able to connect with a doctor concerning the disease. Big hugs to you all.
It sounds like there are some positive changes for your family with the new school. I hope Kira likes her new trike. I had a three wheel recumbent for several years and it was great--so nice and stable. BTW, your girls are adorable!
Good to see that drivers in your country are decent enough to keep out of the bike lane. I wish it was the same all over.
Prayers for your family!
A lot of people have had their speeches restored, you are such a blessed family and I pray for healing in your daughter's life, with faith she will improve and be healed in Jesus name. Amen
My heart just broke hearing your story. I’m so sorry to hear all you and your family are going through. I wonder if your evil neighbor feels any remorse.
I’e heard many times that God doesn’t gives more than what we can handle. He, God will give you the strength and wisdom to see you through.
You are an amazing man! I can sense and hear your loving heart.
Prayers for your entire family. Both of your girls are adorable! Let’s, you are one brave girl! Lots of hugs and love.
You guys are always in our prayers. Love from Turkey and Indonesia
Thank you for sharing her/your story. Praying for wisdom for the doctors and PTsto grow in their knowledge of this disease and to continue to support and help your family. You guys are rock stars, especially during this crazy year. Sending love to your family! Virtual hugs!
Prayers and hugs to you all ❤️
Best luck for all of you. A lot of love from Sweden.
It was great to get to know the family behind Proof. We as consumers and fans don’t get to see anything but your work life and unfortunately a lot of people forget people have lives behind that let alone tough times with you guys. You guys are amazing and I’m a huge fan and respect you even more now. Thank you for sharing and my thoughts and prayers to you and your family.
Go Kiera! What an amazing family you have. My aunty has FA. I think they found her "wobbly" when she was about 10 years old after having a bad fall off a horse (but don't think it was ultimately related). I think she was diagnosed in her teens. Was not given good prognosis (life expectancy in her 20's) so she didn't bother going to university and just partied up while she could! But then she got married even had two children (though I think full time in the wheel chair from before the pregnancies). I really don't know what treatment she had. I think back in the day we went through everything with no luck. But that was so long ago. And we are in New Zealand so we would have even less specialists. But at least decent public health and social support. Anyway. Both her kids are more than 35 years now old and she is a grandmother to 6 kids. She still talks her head off and is really hard to understand! But we get there! She is sharp as a tack. She is an amazing women even though her crappy brain signals make her life damn hard. I don't have a cure. But she must be over 65 years old now! It's hard. I wish her and Kiera didn't have it. But you guys seem like an amazing family so she is in the best hands. But I send all my good energy to make it the best life possible.
And I have to say, best insta name ever!
I'm glad you recognize these blessings even with the difficult times you and your family are facing. I wish your girls great happiness and success with their new school, new friends, and of course for your business ventures. I love your positive attitude. You are a happy and loving family and you will all get through your challenges with a smile.
Cute kids. Former Mesa resident/ASU grad here, transplanted to Idaho.
I’m enjoying your videos.
Researchers are making nice strides in medicine these days. I hope your family can be the recipient of that progress.
Best of luck!
Thank you so much for sharing this. My granddaughter has spinal muscular atrophy. My son and her lived in my home in Texas. Because California has better medical she was taken there. Your story is tearing at my heart. God bless you all. Hang in there 🙏🏼🙏🏼🙏🏼
Thank you for sharing. I became a Dad last year and things have been complicated to say the least. I respect you all very much for working so hard and wish you all the best on your journey.
She is a real sweetheart! I just want to give her a hug!
She is a hard worker, just like her parents. Best wishes and prayers. Cannot imagine what y'all are going through.
My prayers to you and your family.
Thank you for sharing this. The world needs education and your sharing your daughter's situation helps normalize those with disabilities. I hope all your interventions pay off!
I'm so glad you got a diagnosis! Some families go for years with out knowing there diagnosis and some never find out. I've worked with kids with learning differences and physical differences for over 30 years! Your on the right track and doing everything you should! Your little girl is blessed to have you! The care and love you give her will give her a greater chance at life! To do more with her life longer !!!!! The more physically active she can stay! The better off she will be! God bless your family! You have beautiful children!
Bright blessings on your family.
Good vibes to you guys; take care of yourselves. Lots of love!
All my love. Kira seems like a great little girl.
Much love from Germany ❤️ I wish you nothing but the best :)
You guys are so precious.Stay strong guys.Your girls are adorable. I'm sorry you guys had to move your bakery too.Nieghbors couldn't just leave well enough alone.You guys are difantly risening above.In life our journeys take us to unbeliveable roads.Blessings guys ❤🌻❤
I’m from the UK but now live in Florida! When I was in UK I worked as a Childminder and one of the children I cared for had FA , I use to do all sorts of physio and exercise routines with him, it took years to get him diagnosed, he’s now 24 and is wheelchair bound.... he is like a Son to me and I visit him every time I’m visiting UK I admire you as a family for coming together to give your daughter Kira the best life possible! X
I saw Kira's trike on your instagram and she seems to handle it really well.
Good luck with everything the universe is throwing at your family, stay strong. Hopefully the new year brings some calm as you all adjust to your new normal. 💞🇭🇲 from Australia 💜💙💜💙
Sorry to hear that about your little one. I have lived with a brittle bone disease all my life. My daughter has it yet has never broken a bone yet I have broken over 150 bones. My best advice to you for her is to let her be a kid. Don't shelter her let her grow up on her own terms.
lots and lots of love and hugs....
also great move re: recumbent trike - I have one from a mob in Melbourne called Greenspeed - they even do ones that have hand cranks instead of pedals...beautiful high quality trikes and they sell in the US too if ever you are looking for another in the future...
Oh man. so sorry to hear this news.
I'm wondering if cannabis extract would help. Cannabis reconnects the neural pathways. You would need a high CBD lower THC strain. It can not hurt, but I believe it might do a world of good. Cannabis is really a miracle herb, especially with issues of the brain, and I understand Arizona recently legalized it medicinally. You would encapsulate the extract and she would take it at night, so she wouldn't have to deal with any of the effects while she was awake.
I look at all your videos. Spanish operating in Melbourne, Australia. I love the way you communicate and passion. I have learned a lot about bread during this lock down and experimented at the restaurant with your tricks. Bread now is amazing. Thanks to you. I wish you good luck with your family, hopefully things will get right, you are a blessed family.
Kindest regards
Nacho Castells
So much love from syria to you and your family ☝️☝️☝️👍
Kira is an amazing and beautiful soul. I see the love Amanda has for her and it shines!
Much love to all of you, guys. From Perú.
I had no idea about this condition. Thanks for sharing. It's important to get the information out.
I've been through protracted times where it just seems like a shit show - you guys are grace personified. The new bakery finding you shows you that you are supported. You deserve all the things!
So sorry you are all going through this, what a strong, precious little girl, God bless you all
So nice to see your Familie and the love ❤️ Tanks for the inside Greetings from New Zealand
My daughter has CMT. She had both her children and her tubes tied before she was diagnosed.
She doesn't let herself or anyone else feel sorry for herself or her children. But sometimes, I could just bash my head into a wall, I'm so mad.
I've learned that if we go for a walk they are using 4x the energy I am for the same distance. Her ankle hurts because it's crunching those bones.
All the best to your family.
God Bless Kira and all that love her 💘.
#nevergiveup Much love from Europe!
God bless your family
God bless you guys . She seems very strong willed and I think she will surprise everyone. 🙏🏼
All the best to you.
my respect for you guys grows with every video i watch from PROOF. starting with the concept behind PROOF ; healthy bread produced in sync with nature , just asewome and what everyone should be focusing on , always! hopefully i can taste your bread sometimes! ( but i live in belgium ) seeing this i wish you guys everything you need , awesome for Kira she has such loving parents! Good luck in anything you do ! greetings
My two nephews have Friederichs Ataxia. They were diagnosed in high school. They are involved in studies and participate in the FARA community. We have attended the FARA ride in Huntington Beach.
Kira its on my prays, she have a great parents, GOD is with you guy......
please try Keto for 2 weeks and see if symptoms improve. please please try
Omg pls stop it is genetic???? And now there is treatment still not the cure and help more
Love your family ❤️❤️🌞 Good luck at school 💪🏻🌞🍀☘️🍀🙏❤️❤️❤️
A family with solid plans 😘 Make sure to put bright high flags on the trik so cars and trucks can she her from afar.
Thank you for sharing your story. My prayers go out to you and your family. Much love to you all.❤️
Our thoughts are with you. Love the videos and much respect to you and your family!
Love from India 🇮🇳❤️❤️
I get it. At 35yo (twenty years ago), I started dropping things with the random trip in a😮 feet crossing fall. I now have trouble with depth perception. Five years ago, I was looking through a telescope at a elk, and there was a white blur where the front should have been. I have central vision loss now on the right eye and peripheral vision loss on the left. Ladders and knives are no-no's now. Stuff looks right there but can be 10 feet away. I have started walking on the lateral aspect of my feet, causing ankle, low back, & knee pain. Have a movement disorder neurology specialist now. I learned there is a neuro-retinolgist. Have her wear a 30 day arrhythmia monitor every once & awhile. I kept thinking my stomach was gurgling, but it was afib. My dad developed the same thing at 60.
Oh, my sour dough starter (Laura Jane) was given to my great 5 grandmother as a wedding present. Your bread is tasty. Got some last trip to TUofA for a dissertation class.
I'm really glad we are living in today era... The medicine at least can figure out whats going on. people are much more accepting of people with challenges. And having amazing parents like you she's going to do really well and be loved. And having a kick ass big sister watching her back is great too. Lots of love from Canada.
Beautiful Family. You have both done an amazing job.
stay strong Kira.. from Malaysia
God bless you kira you are beautiful little girl. God bless your whole family.
I was pigeon toed when I was young. My dad had me play a game turning my feet outward.
He called it "walk like a duck".
It really worked because I had to put my mind and feet both into it!
5 min. 3 times a day. 😂😂 And I loved making the quacking noise!
Sending you guys lots of love and luck ❤️❤️❤️❤️❤️
Check neuro supplements like B12 and double check for intestinal absorbtion essays
You have a wonderful family stay blessed 🙏
What a happy girl! I love her dress
all the best from australia
When your child has a problem, nothing else matters.
Would love to hear an update. She's an amazing little girl!
If you need to trial communication devices down the road and insurance is dragging their feet, please let me know and we can connect. I have a large library of devices, which interestingly were all purchased from selling bread. No charge at all. Completely loaner or donation.
dang that must be very harsh on you mentally and financially. amazing how you'll deal with it. too bad there is no social system, you wouldn't have to worry about financials where i live here in germany. GOOD LUCK
I sometimes walk longer distances ~10km+ (~6 miles+)[with hills] and if most of the way are roads/streets with sidewalks, I get slight ankle pain too (I assume it's worse for her).
I noticed, that these slanted streets or sidewalks (for rain to roll down, or basically ramps for cars) seem to be the reason. The ankle just bends more and still has to lift all that energy.
13:32 it's really bent here and her "lower"(left) leg wiggles left and right with each step.
If you look at your feet, you basically automatically change the angle of your feet to "| \" instead of "| |". She can't do that. Maybe it helps a little if she walks diagonally across these car ramps? Might be fun too :)
mis respeto hermano Dios te va a bendecir ,tienes una familia maravillosa ,abrazos
Sorry for Keira's diagnosis. We have a son who has a permanent life threatening problem since age 4. Prayers for family.
God bless you all
God bless
Keara commented she has left ankle pain. Hope J&A notice the alignment in her L limb might be causing her boot to rub/pinch.
OUCH!
❤️
Keira. Sorry! Cute just like her name.
You are a fighter, press on, it is well.
Bless you Kira
I hope that "Ataxia" is not on the list of possible effects of vac-nes, but knowing how much damage they do (and how many diseases they cause), I wouldn't be surprised that it is.
Most of the people are so utterly uninformed about vac-nes (that's the only reason why parents still do it). And nobody will inform them (for obvious reasons).
No, it is not.
@@jilliem
It's up to everyone to answer this for themselves, to research this topic thoroughly. It's not up to a random person on the internet to just say "it's not". Also, there are all sorts of internal to pharmaceutical companies documents in which there are listed a lot of different side effects and conditions they can cause, not just the inserts.
@@Alexa27396 it is from genetic from both parents before covid???
아버님 가족과 행복하게 잘사세요 안녕히가세요