Lily's Story | Krabbe Disease | UPMC Children's Hospital of Pittsburgh

At the Center for Rare Disease Therapy (CRDT) at UPMC Children's Hospital of Pittsburgh, every child diagnosed with a rare disease receives an individualized treatment plan and family-centered care. This is Lily's story. Learn more about the CRDT: www.chp.edu/ou...

[@stacydavis1682]

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

[@loreelee8268]

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

[@christinephelps4938]

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.

[@Wheelstar72]

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 🙏🙏🙏🙏🙏🙏🙏

[@annetteelliott1494]

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

[@nancy-d2m2j]

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?

[@niamcfadden-to3dw]

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

[@alyssacalebforever]

She died?

[@cochiefemeralds3616]

What?! When?!?

[@alyssacalebforever]

@@cochiefemeralds3616 idk the first person said she did. I think the transplant may have been for effective if they found out she had Krabbe before her symptoms began.

[@rosah.901]

Beautiful Lily❤️❤️❤️

[@christineparrish5121]

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

[@scratchy1704]

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

[@kathythureen9341]

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

[@flowerqueen174]

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

[@myhappynest6125]

God bless you 😊🙏

[@kbellmurray]

Incredible.

[@wendynicklin7693]

🙏🙏🙏🙏

[@19th-Nervous-Breakdown]

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

[@rubabmarham57]

I need help for my son

[@TyrekeCorrea]

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?

[@nancyjones6428]

No.

[@amandawitherspoon5225]

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.

[@debicovert6105]

You don’t know what you would want if you’ve never experienced. We cannot judge any parent. They love her

[@reidchambers2521]

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.

[@openthedoor8092]

I also think this is a terrible way to live what will still be a short life with no quality. Why prolong her suffering?

[@joannoeser1861]

People who are parents, can't let go of their child. What a HEART wrenching story.

[@Jacoe413]

I don't think it's fair to judge them unless you've been in their shoes.

[@elenasebusiani2637]

You shouldn't judge these parents, killing a disabled child is the true selfish act! How hypocrite of you to talk about selfishness, it's people who think like you that should be ashamed!

[@georginadunne6998]

You are not the parents of this sweet child. Who knows what is going to happen in the next few years. The medical field is advancing all the time. Its comments like this that is selfish. If you were to walk in their shoes then you can judge but thankfully she's not your child.