A story of Heartbreak and Hope. Neil's journey with CLN2 Batten Disease.
Пікірлер: 54
@pwear25289 ай бұрын
What exceptional and loving parents. Beautiful family.
@teijaflink22263 жыл бұрын
Such a sweet little boy, I hope the treatment is working and he's doing even better now.
@vickygray42683 жыл бұрын
Beautiful boy. They came out with this just in time to save him!
@jackielong99276 ай бұрын
Prayers for the medicine to be approved for all. Prayers To all with this disease. You have a very handsome son.
@keepingitreal714 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...
@keciaaskew51664 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.
@applejellypucci4 жыл бұрын
That "I love you" melted my heart.
@camerrill4 жыл бұрын
God, what a blessing to hear him say "I love you!"
@honeybuzzard28435 жыл бұрын
We Love you too Neil. Stay Up lil Man.
@dianemiller64404 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🙏🏻
@eileenwindras93434 жыл бұрын
I'm so happy that Neil gets treatment and he is a gorgeous looking boy!
@jojozep78208 ай бұрын
Oh my goodness, what an absolute cutey! He’s so lucky to have amazing parents
@lelexx44933 жыл бұрын
❤️🥺 what a lovely boy wish him all the best
@AJKeefe5 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!!❤
@geministarshine78974 жыл бұрын
Wow I'm really happy 4ur family You're all fantastic & I wish you many happy trails🌈🌎🌻❤🦄
@raikouisawesome40744 жыл бұрын
Great thing he got treated! He may need care for the rest of his life.
@user-qh8nh7oe6d6 ай бұрын
Love for you all.
@rosiered34035 жыл бұрын
Much love and hugs from BC ❤
@Paula_Shelton5 жыл бұрын
The ER neurologist said everyone gets a free grand mal seizure????? Uh, nooooo
@lonnied77095 жыл бұрын
I think you misunderstood how he meant that.
@taylorhugstrees5 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
@keepingitreal714 жыл бұрын
What a sweetheart... Keep up the fight......
@berniceseigel64824 жыл бұрын
Bless you
@TyrekeCorrea3 жыл бұрын
Neil looks strong for his age, considering he was stated to have CLN 2.
@jajuice49014 жыл бұрын
God bless
@kellyrocks8043 жыл бұрын
My prayers will be for your family. May God watch over you all.
@MissTotos5 жыл бұрын
Much love to you
@lindamarie65742 жыл бұрын
God bless you all!
@teresadalessio14 жыл бұрын
Amen!! This is incredible. There was no treatment, certain childhood death even just 2 years ago. A mirical God bless.
@jendubay37824 жыл бұрын
Teresa D'Alessio pretty sure it’s doctors and money, not god that found the cure.
@teresadalessio14 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.
@jendubay37824 жыл бұрын
Teresa D'Alessio from experience, everyone blesses god and doesn’t thank the doctors. It’s worth mentioning.
@Mrs.TJTaylor3 жыл бұрын
He looks like an angel.
@sugarcoma76625 жыл бұрын
World's greatest mom!@!@
@uuesgirl3 жыл бұрын
Parents* not just mom
@karenemoug4 жыл бұрын
Awe poor baby Is it just me or does the trio all look alike 11:18?
@mrs.jeon.2824 жыл бұрын
karenemoug yeah
@crazimuch9573 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?
@idontknowmuch34412 жыл бұрын
Ask your cousin
@genevievegray79513 жыл бұрын
Batten is brutal. Donate to help this family..we must end all the battens. .more research. Peacefulove faith God cures blessings
@marlenetadder75483 жыл бұрын
Very sad
@vickygray42683 жыл бұрын
Hyperbaric Oxygen Chamber Therapy could possibly help repair the brain. They have had very positive results with it. Please look into this.
@bubbles81404 жыл бұрын
❤️
@vickysilva1684 жыл бұрын
you are so brave and lovely parents, maybe a bone marrow transplant could help
@idontknowmuch34412 жыл бұрын
No because the problem is in every single cell
@luciemayer19183 жыл бұрын
So sad
@mumr42684 жыл бұрын
🙏
@katiaiovine4 жыл бұрын
Un abbraccio forte
@lilblacklamb2224 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
@uuesgirl3 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
@TyrekeCorrea3 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.