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Life of Davey
United States
Приєднався 24 тра 2021
This is Davey. He was born with a rare disease called Lesch Nyhan Syndrome---marked by not only physical disability but it causes him to hurt himself involuntarily. Boys with this syndrome vary in degrees of self injury and presently there is no cure. Hope is in our wait for gene therapy, which is currently soon to undergo clinical trials once it is approved---date still undetermined. We believe in God and pray that healing would come through Him...and in the meantime, our family hopes others with this syndrome can find some help in some of the creations we have made to keep Davey safe.
This is our life, and how we cope, as we make Davey have his best life possible.
This is our life, and how we cope, as we make Davey have his best life possible.
Crazy things I created to keep Davey safe from self injury thru the years
Due to insufficient safety gear for children with Lesch Nyhan, esp one as high level self-harm as Davey, we were forced to adapt or make our own protection. We tried many different designs and had to keep changing them since Davey would shift the areas he would harm.
Some designs were quite weird looking but they worked. It has been several years now, since Davey turned 12, that we found ourselves at a point where we covered most of his safety needs sufficiently to take a step back and breathe.
Sewing became a necessity and gathering proper materials was another. I never stopped searching for products or items that could be useful for his safety and wellbeing. His constant adaptation to safety gear also meant that I was constantly needing to keep a step ahead of him and have things prepared and ready to go.
Several parents have seen Davey's videos and have asked for the gear and I was more than happy to send them some, as I know how much harm not having them would be. Not all come from countries able to afford professional equipment paid by insurance so I'm hoping other LNS parents can be inspired to make their own or adapt from what Davey has.
May God protect your sons as your family journey thru LNS ❤️
Some designs were quite weird looking but they worked. It has been several years now, since Davey turned 12, that we found ourselves at a point where we covered most of his safety needs sufficiently to take a step back and breathe.
Sewing became a necessity and gathering proper materials was another. I never stopped searching for products or items that could be useful for his safety and wellbeing. His constant adaptation to safety gear also meant that I was constantly needing to keep a step ahead of him and have things prepared and ready to go.
Several parents have seen Davey's videos and have asked for the gear and I was more than happy to send them some, as I know how much harm not having them would be. Not all come from countries able to afford professional equipment paid by insurance so I'm hoping other LNS parents can be inspired to make their own or adapt from what Davey has.
May God protect your sons as your family journey thru LNS ❤️
Переглядів: 161
Відео
Davey's Gift from Make-a-Wish was a 4-seat bike and to meet a real cop
Переглядів 430Місяць тому
For Davey's 6th birthday, Make-a-Wish granted Davey's wish for a bike he could ride with his family. He saw all the other kids on bikes and wanted to ride one. Due to safety reasons, a single seat special needs bike no longer was functional so the safest option at the time was to have one where someone could be next to him as we biked. We found Rhoades Car with a 4 seat option for our family to...
Davey's Safety Gear---lift, sleep safety vest and changing help
Переглядів 6265 місяців тому
These next three items help us care for Davey for transport, diaper changing and sleep safety. It has saved our backs and given us improved quality of life...and changed what used to be a three person job into one or two person job. As Davey grew bigger and stronger, it forced me to invent and improve designs to keep up with his increased and evolving methods of self injury. I hope others deali...
Safety Gear for Davey we have created---Gear #1 Mouthguard
Переглядів 9197 місяців тому
I will be making videos of all the safety gear we've had to make for Davey, one video at a time. Gear #1 is the most important Mouthguard. Next will be his Safety Shirt/Mitt combo. Safety Vest. Leg Divider. Bed Cocoon. Diaper changing setup for a one person change. Without these items, our lives would be so difficult and debilitating to the whole family, not to mention Davey's safety would be c...
Life of Davey---Davey decided he wanted to be Professor Viklund today and give us a lecture
Переглядів 83010 місяців тому
Another glimpse into Davey's life. He has a great sense of humor and loves laughter. He wanted his subjects to call him Professor Viklund today and hear his wisdom 😊as he talks about Bible stories
Davey's First Bus Ride to School---how he overcame his Lesch Nyhan anxiety about the school bus
Переглядів 63010 місяців тому
Ever since the very beginning, Lesch Nyhan manifests in extreme anxiety which often leads to self harm. New people, new places, new sounds, new routine...they are triggers. When Davey started Kindergarten, his teacher encouraged us to use the school bus so he could experience more of an independent school life. It didn't seem like it would ever happen until he experienced the kindness of his fe...
Davey (6 years old). Getting a haircut and the start of Kindergarten for Davey.
Переглядів 59411 місяців тому
With Lesch Nyhan movements and self injury, giving a haircut is pretty stressful. It was Davey's first time in Kindergarten with a class of typical students and the first 3days had me wondering if I was hurting him more by placing him there. Every parent wants to protect their child, especially one who is so vulnerable.
Davey at 6 years old---what he was able to do before LNS took away much of his carefree time
Переглядів 1,3 тис.Рік тому
We found that as he grew older, bigger and stronger, his self injurious behavior also grew along with him. His protective gear increased to various other parts of his body and switched back and forth. The only way to deal with it was to protect him while trying to ignore the triggers and hope it will subside on its own. Here were some of the things we were able to get out and do with Davey whil...
Davey's Christmas 2023
Переглядів 3,1 тис.Рік тому
As kids get older, the less it is about gifts and toys. But one thing Davey still enjoys is make-believe storylines using toy cars when he plays with his dad. It is not often possible that he can use his hands safely, so computer games with special click buttons and stories with his family is what is doable. Merry Christmas and a Happy New Year in 2024!
Davey wrote a song using AI about what he dreams could be true
Переглядів 2,5 тис.Рік тому
Davey has been despairing lately about ever being healed of LND and we try our best to give him hope everyday that the future (before heaven comes) will be bright. With the help of AI, Davey has expressed a hope that most kids have...that they would have superpowers and can do great things. Here is Davey's own song :) Hope you enjoy it as much as we did!
The physical sacrifices of a special needs parent. Giving it our all for Davey.
Переглядів 1,2 тис.Рік тому
The physical sacrifices of a special needs parent. Giving it our all for Davey.
The Stander---Yay or Nay? Weight bearing Physical Therapy
Переглядів 1,5 тис.Рік тому
The Stander Yay or Nay? Weight bearing Physical Therapy
Return visit---Flying to Japan on board JAL, best airline for economy seating!
Переглядів 122Рік тому
Return visit Flying to Japan on board JAL, best airline for economy seating!
I accidentally booked a Tokyo Love hotel
Переглядів 90Рік тому
I accidentally booked a Tokyo Love hotel
Travel to Rural Japan---Okutama. Mountains and beautiful river rapids.
Переглядів 92Рік тому
Travel to Rural Japan Okutama. Mountains and beautiful river rapids.
Lesch Nyhan mouthguards and Lip protection
Переглядів 1,1 тис.Рік тому
Lesch Nyhan mouthguards and Lip protection
Morning walk around Ueno Park, Tokyo, Japan
Переглядів 171Рік тому
Morning walk around Ueno Park, Tokyo, Japan
Travel to Tokyo---first time back in over 30 years
Переглядів 168Рік тому
Travel to Tokyo first time back in over 30 years
Moving into Davey's New Home and First Day of Preschool
Переглядів 881Рік тому
Moving into Davey's New Home and First Day of Preschool
Davey Headed West to His (temporary) New Home
Переглядів 1,3 тис.Рік тому
Davey Headed West to His (temporary) New Home
"The Davey Mobile"----Wheelchairs and Lesch Nyhan
Переглядів 6 тис.Рік тому
"The Davey Mobile" Wheelchairs and Lesch Nyhan
Davey's Typical Dystonic movements during therapy and when therapy had to stop
Переглядів 3,3 тис.2 роки тому
Davey's Typical Dystonic movements during therapy and when therapy had to stop
Davey ---Life with Lesch Nyhan at Two Years Old
Переглядів 5 тис.2 роки тому
Davey Life with Lesch Nyhan at Two Years Old
Good song!
YOOO DUDE THE KID FROM THE NEWS HAS HIS OWN UA-cam
?
Absolutely beautiful child.
Every car manufacturer has the same theft issues not just hyundai and kia.
Why did this happen? Was this targeted? Provide some context please.
@@dronetechtoday it seems they wanted to steal the Hyundai. But when they couldn't (it had been reprogrammed for antitheft by the dealer), they smashed everything they could before they fled. My two cameras failed us at the wrong time. We heard the smashing and only saw this after they left 10 minutes prior. Nearby areas were hit 15 and 30 minutes prior same night.
This just made my eyes well with tears. Davey, everybody loves you.😢
1:53 How do you make mouthguard like that, mama davey?
Out of thermoplastics. I have a video of how I make them online.
This is such a horrible disease. Though I am a fan of Richard Preston‘s books, I have to say that his book, the cobra event doesn’t justify the real Lesch-Nyhan. My heart goes out to everyone who has this and who deals with this, both the sufferers and their families. How is Davey? I hope he is doing all right. God bless you all. P. S., I was born three months premature, weighing only 2 pounds and 9 ounces, and I am blind due to retinopathy of prematurity. I want you to know that Davey is my rock. I have other health issues, and Davey makes me more determined to face whatever life has to throw at me and take it with a grain of salt. Thank you, Davey.
Davey is doing as well as can be expected with Lesch Nyhan. He is usually a happy boy but as he gets older, he is starting to realize how much of life he is missing. There are times when he gets quite sad and wishes to be healed so he could live like everyone else. He is surrounded by safety gear and is limited with what his limbs can do. Life could always be worse no matter where anyone is in life. We thank God for everything He has given Davey in terms of comfort, family and medical care. What he lacks and desires so much now are friends, outside of family. This is where my heart breaks for him😢😢 You seem to have a very interesting story yourself. You said you were blind...but you can still see somewhat, I'm assuming. Thank you so much for reaching out. I read this to Davey and he says to tell you "Thank you and God bless you."
@ I am totally blind, though I can see light and shadow through my left eye. I use the voice app on my iPhone. I am also on Facebook. Please give my love and best wishes to Davey and the rest of your family. God bless you. have a merry Christmas and a prosperous new year.
@ I must also add that if I lived close to you, I would definitely do my best to be Davie‘s friend that he belongs to have.
@@flyinjakesvarioustopics I will tell him your message. And may you have a Merry Christmas and a happy New Year, also. Wishing you all the happiness.
Davey is a beautiful child!❤
He’s a beautiful child!
Happy late birthday, Davey 🥳🎂🎁
Can't believe he's 17! Hope he had a great time 🎉I have a question if you don't mind; what kinds of gifts did Davey get/want? I know he can't use everything the same but surely the lure of the toy adverts get to him too haha! By the way I think it's so cool how you've been able to adapt the game so Davey can join in. Absolute gems, the lot of you! ❤
He usually now gets snacks and video games. Some plush characters that he is interested in, like, Jurassic. He is 17 but still loves to use these toys for role playing with his father. Since he cannot do physical things, his mind does it for him. His life is very limited, sadly, and we wished his world was bigger. But we do as we can :)
Happy birthday davey I miss you always from elementary school
Thank you, Livjot 🙂. Davey misses all his old friends from school, too. He says Hello 👋 and that he hopes to see you one day 🙂
I am getting about half of the words, but when I read as he is talking, it’s like yea! I get that!
I can understand about half of what he says but I'm a teacher and kinda hard wired to pick up different vernacular.
Inspiring how devoted you are to your son. Go Davey !
You guys are wonderful people❤
Happy late birthday davey
I wanna be his friend so bad he seems so sweet 😭😭😭
New subscriber here...Do they know why these children try to hurt themselves?
They lack a critical enzyme transfer to the brain called hprt. What they don't know is WHY that causes them to think of ways to self injure. They don't want to, but the urge is so strong that it is hard to fight. And they do hurt from it and have no pleasure in doing it. It is an uncontrollable action which requires us to protect them from themselves. Daily struggle made only liveable due to his protective gear.
Davey is a gorgeous looking baby God is watching over Davey and your husband and whole family,
Does Davey eat food?
Yes, he does but it has to be small bits and put towards the sides of his mouth. 20% of his daily food is by mouth.
Girl!!!! You’ve got skills!!!!!!!
Necessity is what drives me ❤ and thank God I know a little about sewing!
Davey is a gorgeous looking baby. God is watching over Davey and you and your husband and whole family. God bless you all abundantly AMEN 🙏🏻✝️❤️
I will gladly be daveys friend i am also 17 but i have ADHD and Autism so we could be friends but im over here in California
Very sweet of you! I told Davey
I love your song Davey! You have a beautiful family!
Voting Davey for Mayor. 🎉
What a beautiful, singular family! Much respect to the parents for teaching and modeling such positive values and behaviors.
Thank you for sharing this amazing video ❤
I LOVE Davey’s positive, joyous, BIG energy! And his beautiful smile too! ♥️🤗
💞👍🏻❤️👍🏻💞
Dave’s was clearly meant to have you for his parents…….
This video just shopped up for me. I had a very good friend who had LNS so I am very familiar with this disease. Sending love to all of you. ❤ God Bless.
This made my heart feel great 🥺 LNS is so very lonely and I wish Davey had a close friend that could see thru his syndrome to the awesome and sweet guy he is ❤. Thank you so much for the friendship you had with your friend. I know it meant a lot to him
@@CreamPuffthePom we live in a very small town so Philip was loved by so many. My wish is that Davey finds a good friend too❤️
What a lovely family! Our daughter is 29 now and was born with severe microcephaly and a yet unidentified gene mutation (according to our genetic work up). Life is certainly different but we celebrate each of our children’s lives with thankfulness. No one can ever anticipate what tomorrow will bring at any point in our lives. Happy New Year!
I stumbled across your video tonight. Davey is so strong. He dominated in the arm wrestling and the video game. I'm sure he has faced his share of difficulties, but his beautiful smile, competitive drive, cheeky personality, and kind heart make it all worth it. Wishing you all an amazing New Year!
Thank you. May your New Year be bright 🌞
❤😊👍
Love his beautiful smile Happy Birthday Davey
Amazing lyrics, I truly love it! I'd love to hear more songs. God bless you Davey
His sister constantly cheering him on is so beautiful!
There has to be some way to continue therapy though?? I understand the danger but I refuse to believe there isn’t a way for him to have guided practice of motor control safely.
God bless Daveys father. This kind of love and dedication is so beautiful
It seems like parents like this were made for children and to take care of these children I couldn't do it I can't believe how these people can do this it seems so second nature and very easy for them
Not easy, sad to say. It is extremely difficult every day but it is the life God has entrusted to us. We eventually got into the rhythm of life as we adapted. My friend knows of our hardship and she says their family would never make it if it were her, but one never knows until they've experienced it :)
Thanks for letting people know about your wonderful family.
Sweet
I just found your channel. I'm the mother of 14 children, 2 special needs. All my kids are adults, and one of the special needs adults has spastic quadriplegic cerebral palsy. He is 41 years old and uses a power chair to get around. His speech is mostly unintelligible to those who do not know him. He's diagnosed with mild MR, but he is super smart in many ways. He still utilizes his stander, not really for a physical reason, but for being able to stand up like everyone else. He likes to fit in. At age 30, he requested a trial at a community group home and loved the friendships & freedom, so the rest is history. Im going to enjoy watching your channel. ❤
Happy new year to Davey and family! Stay strong everyone, may God bless your beautiful family❤🎉
Happy new year!!
@@lifeofDavey Buen día soy de Colombia me gustaría saber cómo conseguir el protector bucal que protege a Davey para no morderse. Muchas gracias. No hablo inglés.
@@NydiaGutierrez-c4y We make them ourselves using thermoplastics. Since it has to be customized to his exact lip and gumline, it takes several readjustments until I get it just right so it works well. I have another video that shows how I make it, if you want to give it a try. It is not easy so it might be frustrating at first. We've just made it so long now that it seems simple. Best of luck to you :)
Muchas gracias realmente es de mucha importancia su respuesta para mí, y a qué tengo un sobrino que está siendo diagnósticado con el síndrome de lesch nyham y se está mordiendo demasiado su labio inferior, digo siendo diagnósticado porque hasta hace unos meses su diagnóstico era parálisis cerebral espastica pero ahora todo indica que tiene dicho síndrome. Si me pudiera decir dónde puedo ver el vídeo del cual usted me habla le agradecería mucho ya que acá en Colombia no hay mucho tratamiento y conocimiento para las personas con este síndrome. Mil gracias Dios los bendiga.
praying that Davey would be free of LND in Jesus name AMEN.
Amen. Thank you for your prayer. May the Lord heal him.
He seems like such a friendly, likeable guy.
He truly has a wonderful personality and is very kind. He brings joy and humor to our family. Super quick with witty comebacks.
happy belated birthday davey! God bless 💞🫶
So cute his burst of energy when he heard it ♥
Happy birthday, Davey!