Lily's Gift | UPMC Children's Hospital of Pittsburgh
When she was born, Lillian Grace Smith was the perfect baby. But a few months after birth, her parents, Benjamin and Kathleen noticed regression in Lily's mobility and muscle control. After metabolic, neurologic, and genetic testing, Lily was diagnosed with early infantile Krabbe disease, a rare, degenerative genetic disorder. The Smiths, stunned by the news, were led to Maria Escolar, MD, MS, director of the Program for the Study of Neurodevelopment in Rare Disorders (NDRD) at UPMC Children's Hospital of Pittsburgh. Learn more about the NDRD: www.chp.edu/our-services/ndrd
Пікірлер: 26
When ever she said we only have 7 months left with her I broke into tears just hear her adorable noises If we could send pictures I would send a picture of my cousin Jackie she had the same but she died yesterday
@RoseteMonik
3 жыл бұрын
I’m sorry for your lost 😞
I wish your family the best.
She is beautiful
Lily is so cute bless her heart😢😢. My name is also Lily, bless her little baby heart.😢
@novus291
5 жыл бұрын
She ain’t a baby no more
Pittsburgh children’s hospital is awesome. I live in Pittsburgh and I’m so blessed to have them close to me
I love seeing how our work in disease research helps familes. We do this job bc its a calling to heal. Its never about us, its about the end result being the prevention of suffering. Wishing the family all the best.
Stay strong she is an angel love you all
I wish we knew what happened to this little angel. Why this is not view enough times so people get educated in all this rear deseases to help prevent future damage, give better quality of life to those who suffer it and to those involved. This help to the research.
Just to let everyone know she’s 10 years old as of Feb. 2022.
@jjcgrass
Жыл бұрын
That's amazing
Lily if love can make you alive ,you have plenty of that,to her parents stay strong you have a beautiful baby girl,please let us no how Lily is doing
@melted_sugar3
5 жыл бұрын
Pamela Judd I very much agree🙏🏻🙏🏻😔
God bless, Lily. I hope you will be alright…
@melted_sugar3
5 жыл бұрын
I hope you’ll be all right to lily
Stay strong lily, live life,have fun,be happy and god bless you
Stay strong ❤
Beautiful
god bless
Please can you share if she is doing fine?
@melted_sugar3
5 жыл бұрын
Karun Punchhi yes please
@joetea4870
4 жыл бұрын
"Babies with this condition have a life expectancy of 13 months."
where is the website for this disease?
Is she still alive because I know that horrible disease is terminal fast and if u guys stopped her from more loss of brain function if u actually like cured her or found that this is a legitimate treatment...I live in pgh too!!!
@ejwis1
2 жыл бұрын
She lived and is 10 years old.