How Nora Communicates. Nora the Pocoyo fan. From Goodentree.com SMA

Nora and her Nurse teaching Nora to say two word phrases. She was working on Hello Pato after this cartoon called Pocoyo that she watches. Pato is a duck
Nora is dying from SMA (Spinal Muscular Atrophy). SMA is the #1 genetic killer of infants and 90% of Type-1 SMA kids don't live to see their 2nd birthday, some never make it to their first. SMA is a horrible disease that weakens all the voluntary muscles of the body. Cough, sitting, standing, swallowing, hands, fingers, toes - everything skeletal is affected. Nora has almost no movement left. Her brain is not affected though she she's like any normal 3-year-old but trapped in a failing body. She is growing weaker and weaker as the disease progresses. There is no treatment for SMA and there is no cure. We just make the most of the time we have left with Nora.

Category:

Entertainment

Tags:

• Nora
• SMA
• Goodentree
• Spinal
• Muscular
• Atrophy
• Speech
• therapy
• pathology
• terminal
• child
• pocoyo
• pato

[saddiecalico]

what exactly does she have? she is so precious. she is definatly a beautiful little girl! i want you to know im praying for this little girl!! i believe you are being the best parents i have ever seen when most parent with children like this just let them sit their by their selves. this is just so inspiring to me.

[Goodentree]

@saddiecalico Nora has type-1 SMA which stands for Spinal Muscular Atrophy. Type-1 is terminal. Each day is a challenge. Thanks for watching

[TheEvilSugar]

Wouldn't it be great, if there was a way to move someone's brain into a different body? I wouldn't be able to bond with Nora this much, if I was her mother and knew I'd have to let her go, but at the same time, I'd WANT to, because I'd have to say good bye at some point... :( Don't you guys feel super scared?! I want to hug all of you....

[Goodentree]

@TheEvilSugar Scared and worried. Scared about the final day for sure. Worried that when she's gone we'll be left with regret that we didn't do more with her or spend even more time with her. I think the regret would be worse if we didn't bond as closely as we have. She's so funny and outgoing it's impossible for me, as Nora's father, to push feelings aside and try and keep my distance from Nora in order to protect myself for the end. I see your point though

[RiichFlyMontana]

iS Dying?

[Goodentree]

@RiichFlyMontana Yes

[12jamesmommy]

EVERYTIME, i watch yalls videos of Nora, it breaks my heart cause one day yall wont have that besides memories. Im praying so hard, an that she stays strong. I know its gotta be hard for yall as parents cause its hard seeing your lil girl like that. I hope you two get to spend many more years with her.