Neil's Story - CLN2 - Batten Disease

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Neil's Story - CLN2 - Batten Disease

Рет қаралды 37,721

Andrew McFadyen

Күн бұрын

A story of Heartbreak and Hope. Neil's journey with CLN2 Batten Disease.

Пікірлер: 54

@pwear2528 9 ай бұрын

What exceptional and loving parents. Beautiful family.

@teijaflink2226 3 жыл бұрын

Such a sweet little boy, I hope the treatment is working and he's doing even better now.

@vickygray4268 3 жыл бұрын

Beautiful boy. They came out with this just in time to save him!

@jackielong9927 6 ай бұрын

Prayers for the medicine to be approved for all. Prayers To all with this disease. You have a very handsome son.

@keepingitreal71 4 жыл бұрын

I am so glad that Nationwide Children's here in my city of Columbus OH was able to try and help this young man.... Too many kiddos have died from this...

@keciaaskew5166 4 жыл бұрын

When I discuss this to my neighbor, my neighbor told me that batten disease isn’t real and I shouldn’t listen to the internet. As I looked into CLN3 batten disease it’s real. And fatal.

@applejellypucci 4 жыл бұрын

That "I love you" melted my heart.

@camerrill 4 жыл бұрын

God, what a blessing to hear him say "I love you!"

@honeybuzzard2843 5 жыл бұрын

We Love you too Neil. Stay Up lil Man.

@dianemiller6440 4 жыл бұрын

You all already had my heart but when Neil said I love you - my joy overflowed! You have a beautiful son and you both are strong and loving! My hope is for Neil’s journey to be less bumpy so that gorgeous smile is evident daily. Prayers with you all🙏🏻

@eileenwindras9343 4 жыл бұрын

I'm so happy that Neil gets treatment and he is a gorgeous looking boy!

@jojozep7820 8 ай бұрын

Oh my goodness, what an absolute cutey! He’s so lucky to have amazing parents

@lelexx4493 3 жыл бұрын

❤️🥺 what a lovely boy wish him all the best

@AJKeefe 5 жыл бұрын

Great story. I study a type of hereditary paraplegia caused by a deficiency of an enzyme - HSP7. Really interested to see this next generation of AAV based therapies.

@blossom1643 Жыл бұрын

Precious boy! Wish y’all all the Best!!❤

@geministarshine7897 4 жыл бұрын

Wow I'm really happy 4ur family You're all fantastic & I wish you many happy trails🌈🌎🌻❤🦄

@raikouisawesome4074 4 жыл бұрын

Great thing he got treated! He may need care for the rest of his life.

@user-qh8nh7oe6d 6 ай бұрын

Love for you all.

@rosiered3403 5 жыл бұрын

Much love and hugs from BC ❤

@Paula_Shelton 5 жыл бұрын

The ER neurologist said everyone gets a free grand mal seizure????? Uh, nooooo

@lonnied7709 5 жыл бұрын

I think you misunderstood how he meant that.

@taylorhugstrees 5 жыл бұрын

What he meant was is that people can have one seizure and NEVER have one again. Like myself. Nothing is wrong with me... it just... happened. It becomes a HUGE issue when it happens again and again and again. Meaning neurons keeps firing abnormally multiple times not just one instance

@keepingitreal71 4 жыл бұрын

What a sweetheart... Keep up the fight......

@berniceseigel6482 4 жыл бұрын

Bless you

@TyrekeCorrea 3 жыл бұрын

Neil looks strong for his age, considering he was stated to have CLN 2.

@jajuice4901 4 жыл бұрын

God bless

@kellyrocks804 3 жыл бұрын

My prayers will be for your family. May God watch over you all.

@MissTotos 5 жыл бұрын

Much love to you

@lindamarie6574 2 жыл бұрын

God bless you all!

@teresadalessio1 4 жыл бұрын

Amen!! This is incredible. There was no treatment, certain childhood death even just 2 years ago. A mirical God bless.

@jendubay3782 4 жыл бұрын

Teresa D'Alessio pretty sure it’s doctors and money, not god that found the cure.

@teresadalessio1 4 жыл бұрын

@@jendubay3782 Hey, it's a saying. I've a bachelor's in molecular biology, spent most of my grad school days in a bio /chem lab, so I am pretty confident that I understand the fundamentals of gene therapy. It's a wonder that someone actually thinks another person's use of a colloquialism is his or her factual assessment of a biological process.

@jendubay3782 4 жыл бұрын

Teresa D'Alessio from experience, everyone blesses god and doesn’t thank the doctors. It’s worth mentioning.

@Mrs.TJTaylor 3 жыл бұрын

He looks like an angel.

@sugarcoma7662 5 жыл бұрын

World's greatest mom!@!@

@uuesgirl 3 жыл бұрын

Parents* not just mom

@karenemoug 4 жыл бұрын

Awe poor baby Is it just me or does the trio all look alike 11:18?

@mrs.jeon.282 4 жыл бұрын

karenemoug yeah

@crazimuch957 3 жыл бұрын

So my cousin's children both have CLN2 and are receiving treatment. They got the enzyme treatments relatively early, but does it just make symptoms just plateau or does it help progress?

@idontknowmuch3441 2 жыл бұрын

Ask your cousin

@genevievegray7951 3 жыл бұрын

Batten is brutal. Donate to help this family..we must end all the battens. .more research. Peacefulove faith God cures blessings

@marlenetadder7548 3 жыл бұрын

Very sad

@vickygray4268 3 жыл бұрын

Hyperbaric Oxygen Chamber Therapy could possibly help repair the brain. They have had very positive results with it. Please look into this.

@bubbles8140 4 жыл бұрын

❤️

@vickysilva168 4 жыл бұрын

you are so brave and lovely parents, maybe a bone marrow transplant could help

@idontknowmuch3441 2 жыл бұрын

No because the problem is in every single cell

@luciemayer1918 3 жыл бұрын

So sad

@mumr4268 4 жыл бұрын

🙏

@katiaiovine 4 жыл бұрын

Un abbraccio forte

@lilblacklamb222 4 жыл бұрын

My 3 year old daughter is being tested for batten and a few other things...I wouldnt say this is the worst news ever

@uuesgirl 3 жыл бұрын

Huh? It's HORRIBLE. It takes everything from you and slowly kills you?!? How is that not the worst news?? It's a fatal illness! 100% of the time

@TyrekeCorrea 3 жыл бұрын

You helped people in other countries partake in that quack stuff?!?

@nancyekstrom8409 Жыл бұрын

A parent will do almost anything to preserve their child’s life. Sometimes we may believe that we have no choice but to try the unproven treatments. To be honest, I have my doubts and suspicions about the Covid 19vaccines. What does anyone really know, other than what our government tells us? I am alive today because I entered a clinical trial program. At the time of my diagnosis, I was told to put my affairs in order ASAP. That was in 1996, and here I am today, nearly 30 years later, still on the green side of the grass and enjoying life.