Wind in the sails for Eleonorka
Spinal muscular atrophy (SMA) type II is a rare genetic condition. Every year, approximately 8 to 10 children are born with spinal muscular atrophy (SMA) in the Czech Republic.
Our daughter is one of them. And she needs your help.
This is Eleonorka.
She’s a perfectly ordinary, cheerful little girl, much like the one you might have at home yourself. She runs around, laughs, gets angry, and just can’t seem to slow down during the day. She came into our lives in 2021 as a completely healthy baby.
But our journey toward a happy family took an unexpected turn when a diagnosis came along nine months later. It hit us like a devastating blow, completely out of the blue — but it also turned out to be an incredible stroke of luck in the midst of misfortune. Because we discovered it in time.
Spinal muscular atrophy (SMA) is a serious inherited disease that affects the part of the nervous system responsible for movement and control of the legs, arms, and head, as well as the muscles used for breathing and swallowing.
In practice, without treatment, SMA causes progressive weakening of all these parts of the body, eventually leading to complete paralysis. Fortunately, there is something that can be done about it…
SMA cannot be cured, but its progression can be stopped. The earlier the treatment is administered, the better.
Although Eleonorka has undergone specialised gene therapy, the damage that occurred before treatment is irreversible. She therefore still requires constant care, specialised rehabilitation, and assistive devices that are not covered by health insurance. We are deeply grateful for every voluntary donation made to our transparent bank account.
Even a small contribution — the price of a single cup of coffee from just a few people — could make a real difference to us. It could help fund a new wheelchair or another assistive device that would allow Eleonorka to move around more freely and independently.
Thank you!
WELCOME TO OUR HOME!
The diagnosis affected our home, too. We had to make changes both inside and outside……
So now we, too, are officially under the wings of the Good Angels.
Learn more about the association here.
