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

Рет қаралды 87,758

9 жыл бұрын

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/our-services/rare...

Пікірлер: 37

@stacydavis1682 Жыл бұрын

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

@loreelee8268 4 жыл бұрын

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 5 жыл бұрын

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 4 жыл бұрын

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 6 жыл бұрын

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

@christineparrish5121 5 жыл бұрын

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

@user-mo5yb9ui7n 5 ай бұрын

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?

@flowerqueen174 4 жыл бұрын

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

@scratchy1704 Жыл бұрын

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

@myhappynest6125 4 жыл бұрын

God bless you 😊🙏

@niamcfadden-to3dw Жыл бұрын

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

@hyperbloxplayz Жыл бұрын

She died?

@cochiefemeralds3616 Жыл бұрын

What?! When?!?

@hyperbloxplayz 11 ай бұрын

@@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.

@kathythureen9341 Жыл бұрын

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

@kbellmurray 5 жыл бұрын

Incredible.

@rosah.901 9 ай бұрын

Beautiful Lily❤️❤️❤️

@wendynicklin7693 2 жыл бұрын

🙏🙏🙏🙏

@rubabmarham57 5 жыл бұрын

I need help for my son

@TyrekeCorrea 4 жыл бұрын

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 2 жыл бұрын

No.

@19th-Nervous-Breakdown 3 ай бұрын

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

@amandawitherspoon5225 3 жыл бұрын

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 Жыл бұрын

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

@reidchambers2521 3 жыл бұрын

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 2 жыл бұрын

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 Жыл бұрын

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

@Jacoe413 Жыл бұрын

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

@elenasebusiani2637 Жыл бұрын

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 Жыл бұрын

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.