Lily's Gift | UPMC Children's Hospital of Pittsburgh

Рет қаралды 62,677

11 жыл бұрын

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

@edwinreilly7584 4 жыл бұрын

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 😞

@ericasnackenberg6449 5 жыл бұрын

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

@WhereTheBeaversLive 11 жыл бұрын

She is beautiful

@nanatrout5656 11 жыл бұрын

I wish your family the best.

@patriciamurphy3899 3 жыл бұрын

Pittsburgh children’s hospital is awesome. I live in Pittsburgh and I’m so blessed to have them close to me

@valeriestevens5440 3 жыл бұрын

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.

@taryndasilva645 10 жыл бұрын

Stay strong she is an angel love you all

@RoseteMonik 3 жыл бұрын

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.

@pamelajudd 9 жыл бұрын

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🙏🏻🙏🏻😔

@ejwis1 2 жыл бұрын

Just to let everyone know she’s 10 years old as of Feb. 2022.

@jjcgrass Жыл бұрын

That's amazing

@SmokeeArt 8 жыл бұрын

God bless, Lily. I hope you will be alright…

@melted_sugar3 5 жыл бұрын

I hope you’ll be all right to lily

@jamesfayant7403 9 жыл бұрын

Stay strong lily, live life,have fun,be happy and god bless you

@ridhashah6562 11 жыл бұрын

Beautiful

@kristyhodgson2127 Жыл бұрын

Stay strong ❤

@meridianmccall5793 11 жыл бұрын

god bless

@karunpunchhi 10 жыл бұрын

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."

@nancysonneman1530 3 жыл бұрын

where is the website for this disease?

@christineparrish5121 5 жыл бұрын

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.