Creating Visual Memories with Rod Cone Dystrophy
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- เผยแพร่เมื่อ 7 พ.ย. 2024
- Mahia and Tipene Stephens were born with a congenital eye disorder, causing their eyesight to deteriorate rapidly. As they grow into young men, mum Lane is determined to foster their independence by teaching them important life skills and encouraging them to give everything a go. From acting classes and Jiu-Jitsu lessons, to golfing and woodworking, the boys and their siblings Tia and Kaea try anything at least once.
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What an amazing woman and mother and beautiful, resilient, caring and independent kids don't happen by luck, they are because of her. My absolute respect to all of you. Also got to give the guy at the kart track a huge shout too, you sir are a rare gem of a human :)
Thank you. Shawn at Naki Nitro is a beautiful person and in fact has created opportunities for many low vision drivers to experience the fun of go carting. I appreciate your kind words.
I'd like to add what wonderful kids you have. Lucky family.
I'm always so impressed by community services available in Australia and New Zealand. Strong moms make strong kids.
We are very fortunate to have the supports and services we have here.
Aotearoa (New Zealand) is a wonderful country to raise children. We're very lucky to come from a loving culture.
What an incredible mother to think of things like driving something with an engine. All of these children are so lucky to have her.
I think this woman’s teachings and patience is amazing. She is so dedicated to making sure her children are prepared for the future. I wish I had half of the patients and caring this mother had, it’s all about her children.
From one Taranaki mum to another, you are such an amazing mum.
I am in awe.
Keep on being such a fantastic person with your fabulous children.
The world needs more people like you. 💕
Thank you Taranaki Mum 💚
I had best friend get diagnose with RCD at 31 years he had a wife and have to support his family financially, this video is inspiring me to give the same experience and preparation for his next life. even we don't know when he will get full blindness, as a friend we just can give him support and whatever he needs. thank you so much!
Your friend is blessed to have you
What a lovely family! It really touches my heart how mindful the mum is to priorotise rich and varied experiences for her children.
I work with the blind and I find it interesting how we as sighted people see blindness. We are so dependent on our sight we think it would be awful, but I see on a daily basis the rich, full, and meaningful lives that my blind friends live, and I realize blindness is really not that debilitating, and doesn't have a big impact on quality of life.
Margit Hammer I mean it does though. I have rod cone dystrophy and my vision is decreasing every year and eventually I’ll go blind but it prevented me from playing sports in high school and kids made fun of me for not being able to see things in science labs and stuff. I’m tryna live to the fullest with my sight. I just hope someday they find a cure for blindness because eyesight is very important to people and a wonderful gift people with good eyesight have
@@buggub I appreciate your response. I think you're right. The kids I worked with (I no longer work there), were born blind. The adults who were blind that worked there, they had lost their vision as young children or teenagers, or had been born blind. I know there's an adaptation process. I know it's not as easy to be blind as it is to be sighted, but after the adaptation process is complete, after acceptance is gained, the quality of life is not impaired. I think it probably takes time. I can imagine when every year, your vision gets worse and worse, but you still retain some vision, you're constantly in that traumatic stage, it's constantly a sense of loss. I hope you can believe that it does get better. I wish I could relate. I have eyesight. I can't relate entirely. I know what it is to have something and lose it. I know what it is to be in that state of perpetual loss. I think any human can relate to that.
My mom and step dad are very close friends with a couple who are blind and the things they do used to amaze me and now when I hear about what they did or going to do it’s so normal now. But they have a more active life than I ever have! Always off somewhere and going on vacations just them. It’s incredible
Wow. Gryt👌🏽
@@buggub I have also Retinitis pigmentosa. It makes me realize how important and unique our body and its system, specially eyes.
Lane is an amazing mother, remarkably thoughtful, committed, creative, providing awesome opportunities and raising lovely people.
Thank you Liz 💙
This is such a sweet family. The mum really loves and cherishes her kids it’s so potent and wonderful. I hope God has his hand in this family’s life
Amazing mom and kids!! But the guy at the go cart place is an incredible person!! He heard their story and instead of turning them down he welcomed the idea and helped, encouraged and went out of his way to let these children have the most fun and best experience possible.
Yes Emily. Shawn is such a great person. He has gone on to help many more low vision to experience the joy of driving. Taranaki is lucky to have Naki Nitro.
I'm sure I'm not the only one who thinks she is an outstanding mother! They are so fortunate to have her and I'm sure they will all have fulfilling lives.
Thank you. I'm lucky to have such wonderful kids
Amazing Mum you are Lane, what a incredible mum you are to your beautiful Children. My mate in Portland USA posted this video... so glad he did so I could see your story..
Thank you Richard.
So sweet of the mom to experience driving using a go cart before his sight goes. Independence is the best gift she could give her kids. God bless you Lane!
Thank you
What a family everyone of them nothing but respect for you all.
Lane is like a Maori queen, so dignified and respected :)
She is such a strong mama. Her kids are going to be so tough, brave and caring
You’re a very good mom, Lane. You’re caring and insightful. Don’t shortchange yourself.
You have sweet, resilient, and very adorable children. You're a very loving and patient mum to all of them. And the people in your community are supportive and awsome. May God bless you all!🙏
Thank you Rachelle.
We're so fortunate to be surrounded by incredible people.
The most awesome mom EVER. God Bless you and you’re great kids. Massive respect ✊
Such a lovely and motivating family! I can feel the love you all have for each other. As a mom, and grandmother, I realize I can not comprehend the challenges you have had and will continue to deal with. But I can tell you will be successful overall. You are a wonderful mom, amazingly strong, courageous, loving, wise, and caring; providing the tools, experiences and examples that will stand your beautiful children in good stead as they move forward in their lives. Each of you are in my prayers this night. May God bless you richly and provide all your need met.
You're right Gigi. Having a house full of love and laughter has created a wonderful life for us. We're good 🤗 and feel very blessed. Many thanks
Her blind children do more chores than my kids with perfect vision, by far.
I shouldn't have laughed but I did 🤣
I'm a kid and I know that we don't like doing stuff. We're also stubborn (but only a little lol). I'm sorry you gotta deal with that. I think that we don't appreciate how much our parents love and care for us ❤️
What a great mother. Their father should be helping support his children. So sad for someone to not help out financially.
God Bless you. You are a wonderful mother. A lovely beautiful family
I love your whole family, everyone is helpful and compassionate
I am in awe of this entire family and Lane, you are an incredibly insightful, resourceful and loving mum. You are giving your children so many opportunities. Challenges aside, you are creating and sourcing activities and experiences that will help shape and strengthen your children. I have no doubt that they will find life partners in the future. No doubt! Oh! And watching Mahia navigate that playground (at full speed!), whilst skipping over the timber barriers, was a delight to witness. Many blessings to this beautiful family x
Thank you for your kind words Grace. I'm glad you felt delight instead of heart palpitations 🤭
@@lanestephens2573 ❤️❤️❤️
You are a special human being and I wish you and the children continued blessings 🙏
Thank you
What an amazing, supportive mum with such sweet, well adjusted children. I have no doubt they will accomplish anything they set their minds to!
Thank you
Fantastic children and an amazing mum. Very inspirational. ;) x
Just watched this inspirational video!!! I too have a blind son and know all too well how things can change and peoples perceptions are often misguided. Unfortunately for me my son was not diagnosed until he was 17 and we all found it devistating!! I have to say my son is very clever in the fact that he is great at memorising people and places. His sight has held firm over the past 2 years but the specialist says by the time he hits 30 or 40 his sight will be deminished further. His current vision is shadows only and can only distinguish green and orange.
I applaud this mother and her courage to do it all solo.
She makes me look a little inadequate!!!
I wish you and your son all the best. Mum's that have kids like ours have a special connection with each other. I truly wish health and happiness for you both.
@@lanestephens2573 why thank you, I do hope that your family is doing well in these uncertain times??
My son is now 27 and has not coped well in the sense that he has no real friends and doesn't like to go out, unless necessary 🤔. He comes to work with us and we make sure he knows he is loved and appreciated, but he continues to want nothing more than to stay st home and do whatever he wants. Shame. I can't seem to get through to him any more and if I push hard enough, he just reminds me that it's my fault.
I just keep on trying, but I worry that after we pass, he won't have the same level of support!!
Yes there are services but he doesn't want to use them, mores the pity!!
I'm sure that you and yours will fare much better, for now I'll keep on at him and try whatever I can to help him along.
With respect to you for replying
Stay strong and love one another ❤️
I take eyesight for granted 😢...
Outstanding family. Sending love their way❤
No other words than you are inspirational. Everyone of you, the children, the Mother and that amazing man at the race track. Thank you for making our world a better place
Thank you Hattie
What a beautiful family! Those babies have one amazing Mom and Tia is gorgeous!
Thank you, I agree she is beautiful and I'm happy she's stayed that way. So blessed
Perfect indeed! Kudos to raising these beautiful, kind children. You are endowing them with wealth that money can't buy!!
Thank you
What an AWESOME Mum, and such BEAUTIFUL Children, their care and love for each other is heartwarming. God Bless ALL of you ❣️
Thank you Anne
Amazing young family and great mum
You mum are a treasure not many mums like you! I have three daughters and you do so much with all of them. I was absolutely tired by the middle of the video of how much you do for your children. You are very intelligent and caring. Blessings to you
Thank you Juanita 💛
Thank you for sharing. My heart goes out to you all. You’re doing an amazing job and it can’t be easy. Your children are a credit to you. I hope things get easier for you all. You all deserve so much. Xxx
Such well behaved beautiful caring children and the mum is amazing doing it all on her own ! All the best in life for you all ❤️from 🇨🇦
Thank you Susan
This really touched my heart. My husband had Rod Cone Dystrophy. Bless your family!
💙
Your an Awesome Mom. Mahia e=reminds me of My grandson. He isn't going bling But has a vision problem and in legally blind in one eye. I think it is wonderful how you are giving the boys these experiences.
Thank you and all the best to your grandson
Wow! What an INCREDIBLE MOM! Your kids are all so beautiful and blessed to have you! AMAZING JOB MOM!
Thank you Megan
I have no words.......just admiration for you all.
Mom is a beautiful woman inside and out. What I love most about witnessing a glimpse into their lives is that she is passing that beauty on to her children. They seem to be well rounded and yet grounded children. I hope she doesn't worry too much that they won't find a partner, because I feel very certain someone will love the precious souls they are.
Thank you Misty. I'm realising your right as they get older. Happiness will definitely stay with them throughout their lives.
Wow mum you are doing an awesome job you are amazing your kids are amazing big ups to you💜💜👌
Thank you
What a wonderful and giving mother ❣
What a wonderful family and what an extraordinary Mum !
Thank you
i am so happy i clicked on this story - i had seen it and well finally got round to watching it. what an inspirational family - and the mother, this is one heck of an amazing lady. HEr kids will be amazing because of all the opportunities and experiences she is giving them. A truly lovely family : )
Thank you Suey. I appreciate your kind words
Amazing women and mothers. I could so see us being good friends. I love her children. I only have one child and always wish I could have more. Here she is doing It all by herself. Having a great support system around them is so important.
Friends from afar then 💛
WOW WHAT A GREAT PERSON.. BE STRONG ALWAYS GOD BLESS TO THIS FAMILY.
🌻🏵 I was so amazed with your life.. I can honestly say you should definitely win "Mom of the year Award".. Your children are beautiful and perfect.. My heart felt so warm just to hear your story. The very best wishes for you and your family.. Much love ❤️ from New Orleans 🎭🎭
Thank you so much Genevieve 💙
You are a very beautiful loving mother. Your entire video made me smile. Your children everyone are so gifted. You are all very blessed! Great job! Never give up. You are a very wise person.
Thank you 💛
Damn the moms on these videos make me feel inadequate sometimes. I know I'm a good mom but they are superstars! The kids are amazing and I for one can't wait to see the world when they take it over.
Thank you so much ❤️
Bravo mama! Damn! I wish Iwa half the mom she is! I these kid are so suitable! So smart the world at their fingrtips
I love the names. Wonderful family!
amazing kids...
great mum.
Thank you for sharing your inspiring story, you have the most positive attitude and have obviously instilled it in your kids. I kept wondering if your boys might get a seeing-eye dog someday? God bless your family!
Thank you. I know Mahia would love a dog but there's a process for us to follow. We would all love to get another one some day. Dogs are awesome for so many reasons.
Wow you are a beautiful person Lane. Kia Kaha!
Nga mihi mahana
Strong mom. Beautiful smart kids 😘💪❤️
Thank you 💙
What a great mother.
What a wonderful mother ❣️❣️❣️❣️the children are amazing ❣️❣️❣️
The grief and guilt this mum must feel because she or her husband passed on this devastating handicap to her children.They seem such lovely kids all credit to her,but it must be a hard life for her,bringing up her blind children alone without their father.
We're very blessed with a loving home and beautiful community. To be honest the hardest thing about our life is having to work instead of spending time together.
Beautiful parenting ❤
My dad has cone dystrophy and I’ve never heard of anyone having something similar. Crazy
A strong woman.....wow.
Amazing Mum!!! Your children are blessings from JESUS for y o u
❤️❤️❤️🙏🏻🙏🏻🙏🏻✝️⚔️🙏🏻🙏🏻🙏🏻❤️❤️
What an amazing family
What a great family just awesome .
Gr8... now I'm crying
May Allah guide and bless your all , you-my lady- are indeed a woman of gold, may Allah guide you and get payed off for your heroic work with such great little adorable kids
Thank you great lady , really I wish you best faith and rewarding,
Thank you so much 💛
Good on you Mum, you're giving the boys the independance skills they need right from the start, if only every parent could do this. Rod-Cone ddystraphy is also in my family, but it sounds like these boys had more vision than any of us ever did. I hope they continue to be successful and enjoy their lives.
Thank you Mel. I wish you all the best.
Great family, great video!
I am legally blind I know how it is to raise a child that is blindI've had seven surgeries two cataract surgery and seven more on top without my glasses I am blind even with them on you're a good lady and God bless your soul with God God and gladness
Thank you, I wish you all the best 💛
Beautiful hearted sister
What an awesome mother , who loves her kids endlessly , kudos to you 👌❤
Thank you Marz 💚
Thumbs up! :-)
Indiana USA.
Really awesome family. 💜
Hey, your videos are usually captioned. And this one is not captioned. Thanks!
At this point I've watched so many of these videos I'm starting to recognize the Maori words they use
In Kerala state, India, there is an Ayurveda treatment for this type of eye disease. My sister has recovered from this disease. This treatment will be useful for you.
Can u tell me about the medical
You and your family are wonderful!!
Amazing Mom.
It helps when family loves us kids I have a heart conditions problem and I have astuim and astic
Yes, love helps but adversity can give you great inner strength too 💛
An inspiration ✨️ ❤
Beautiful family 😊
Omg I love Balgo how crazy they lived there.
High five to that family 😊
Are those names natives from the nz?
yes, the names are maori names
Fantastic mom and beautiful woman, rare like reidite
Thank you Antonio. I had to look up reidite, it's actually really interesting. I appreciate your kind words
When she said they have a heart attack when Mahia runs around and can get hurt, I think boys are built to do that to us moms. They have no fear while we almost lose it every time 😂
You're so right 😉
Aww beautiful
I'm not blind so idk for sure if it works but I saw something and It said if you want to know what being blind 'looks' like close just one of our eyes and try to look thro the closed one. It isn't black. There just isn't anything there.
Cute family.
What a choice mum
In a lot of stories of families with children and they need help, I noticed the fathers aren’t around. Not all of them but a lot of them. It’s like the fathers can walk out not worry about helping.
Hi Lane (if you happen to read this), have you considered learning and teaching them echo location techniques? If you're not aware of it I suggest searching 'blind echo location' on TH-cam. It helps blind people to navigate enormously
Thank you Dan.
I didn't realise there were comments until now 🤦🏽♀️
I will look it up thank you.
Beautiful Whanau
🤎
MY GUY BE READING THE LOST HERO YAS
Not fair from life. But at least they have a fanastic mom!
💚
Did I see Lord of the rings at the beginning (the book the oldest boy is holding)?