See that is wonderful wonderful healthcare worker's that truly care and are able to press the buck to do what needs to happen..so glad she is better now and you have more time with her.i lost two babies so I feel the pain of the loss but have three beautiful daughters and four beautiful grands that make my day daily

I am proud to say that I live about 30 minutes from this wonderful hospital.

we lost a great niece to the side effect of krabbe, about 5 years ago. Anna's law was passed here in Kentucky to help others not to lose their child. one simple blood test was all it took.

Glad they made her disease not progress more. She’s beautiful and shares my late nans name and my nan was a strong woman. My 🙏🙏🙏🙏🙏🙏🙏

Heart breaking decrease......I'm so sorry.....

She's so adorable so sad she can't even hold her head up

Omgosh that is amazing!!!I am so proud of the city I live in...GO PGH...CURING KRABBES NEXT!?

God bless you 😊🙏

Rest In Peace Lilly I’m so sorry for your loss

WHAT A BEAUTFUL BABY GIRL. HOW SAD TO SEE A HANDICAPPED CHILD.

Incredible.

It's amazing what they can do now ❤️👌💕

I know someone with Krabbe's disease who will be 20 years old. As much as I know she is loved, she has been blind, deaf, unable to move, eat, talk, for her entire life. She is so crippled with severe scoliosis, her wrist bent backwards, arms are and legs contracted, lives in a bed or wheelchair 18 years of her life. She has never smiled, only can feel heat, cold or pain. Basically has only a brainstem, yet she survives, but what kind of life is that?

Beautiful Lily❤️❤️❤️

I need help for my son

🙏🙏🙏🙏

Wouldn't taking on a bone marrow transplant limit a patient's ability to benefit from such a transplant in the future if, God forbid, they should happen to contract an illness which could normally be treated by it?

I wish they'd had testing at birth available so this child could have been treated before she'd become disabled.

If I was a child, I wouldn't want to be aware of everything and not able to move for the rest of my life. I'm not trying to hurt anyone, but she would be healed with Jesus and they could see her again someday.

How selfish. The parents wanted to keep her very disabled, with no quality of life , so that they won't be sad, and keep her in a horrendous state.