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...
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🙏🏻
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.
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.
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
@@ThunderStruck15 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.
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?
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.
What exceptional and loving parents. Beautiful family.
Such a sweet little boy, I hope the treatment is working and he's doing even better now.
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...
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🙏🏻
Beautiful boy. They came out with this just in time to save him!
Prayers for the medicine to be approved for all. Prayers To all with this disease. You have a very handsome son.
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.
We Love you too Neil.
Stay Up lil Man.
Precious boy! Wish y’all all the Best!!❤
God, what a blessing to hear him say "I love you!"
That "I love you" melted my heart.
Oh my goodness, what an absolute cutey! He’s so lucky to have amazing parents
Wow I'm really happy 4ur family You're all fantastic & I wish you many happy trails🌈🌎🌻❤🦄
I'm so happy that Neil gets treatment and he is a gorgeous looking boy!
❤️🥺 what a lovely boy wish him all the best
Much love and hugs from BC ❤
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.
Great thing he got treated! He may need care for the rest of his life.
The ER neurologist said everyone gets a free grand mal seizure????? Uh, nooooo
I think you misunderstood how he meant that.
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
What a sweetheart... Keep up the fight......
My prayers will be for your family. May God watch over you all.
Much love to you
Bless you
Neil looks strong for his age, considering he was stated to have CLN 2.
God bless
God bless you all!
Love for you all.
Amen!! This is incredible. There was no treatment, certain childhood death even just 2 years ago. A mirical God bless.
Teresa D'Alessio pretty sure it’s doctors and money, not god that found the cure.
@@ThunderStruck15 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.
Teresa D'Alessio from experience, everyone blesses god and doesn’t thank the doctors. It’s worth mentioning.
He looks like an angel.
Awe poor baby
Is it just me or does the trio all look alike 11:18?
karenemoug yeah
World's greatest mom!@!@
Parents* not just mom
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?
Ask your cousin
Hyperbaric Oxygen Chamber Therapy could possibly help repair the brain. They have had very positive results with it. Please look into this.
❤️
Batten is brutal. Donate to help this family..we must end all the battens. .more research. Peacefulove faith God cures blessings
Very sad
you are so brave and lovely parents, maybe a bone marrow transplant could help
No because the problem is in every single cell
🙏
Un abbraccio forte
So sad
My 3 year old daughter is being tested for batten and a few other things...I wouldnt say this is the worst news ever
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
You helped people in other countries partake in that quack stuff?!?
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.