Dear all, a few days have passed since we received the incredible news that the health insurance company is taking over the treatment with Zolgensma for Hannah.

With that, the first hurdle of a long and uncertain journey is made. So far, we don't know where and when Hannah can get the treatment. But we will certainly keep you informed. We were able to calm down a bit and would like to thank all donors and supporters once again. It is so beautiful how much a community and cohesion can achieve.

The received donations are now set aside for 2 years by the German Muscle Foundation for Hannah. After the end of the 2 years, the money will benefit other projects of the German Muscle Foundation, which are just as desperately in need of support.

As part of the treatment, there will be additional costs such as travel costs, loss of earnings and, depending on the place of treatment, accommodation costs. We would like to set up a therapy room for Hannah at home in order to give her the optimal support and being able to carry out her physiotherapeutic exercises. This includes the desire of a Galileo vibration training device, which can promote muscle building. Since no one can say when and in what form the treatment at Hannah will be effective in the near future, a barrier-free house conversion will be necessary, so that Hannah can move around as independently as possible with her Rolli at home and thus gain a lot of quality of life.

The donation account of the German Muscle Foundation will remain in place, so that anyone who wants and can continue to support Hannah and us, has the opportunity to do so.

Sincerely
Jasmin, Fabian und Hannah ♥️🙏

Happy family

Give Hannah the chance of her life

The Beginning

When new life emerges, it is an indescribable moment for parents. It was also the beginning of a breathtaking journey for us when Hannah was born in March 2018. At first, she developed normally

The diagnosis

until we noticed the first serious differences with children of the same age. At 14 months, Hannah stopped almost all major movements. After countless visits to the doctor, the diagnosis was clear:

Hannah is suffering from "spinal muscular atrophy" – SMA in short.

Our little girl laughed at us while the doctor told us the final diagnosis. For us, the world stopped.

The disease / status

SMA is a rare, life-threatening hereditary disease that causes dramatic muscle loss.
The current treatment with the drug "Spinraza", which has to be injected into the spinal cord every four months under anesthesia, prevented a deterioration of her condition.

Hannah can't crawl, sit on her own or discover life with friends.
But despite intensive daily physiotherapy, countless visits to the doctor and 4 lumbar punctures in 2 months, our Hannah has never lost her joy in life
Every day she fights for her muscles.

The drug

But there is hope. In May 2019, the drug "Zolgensma" was approved in the USA.

It is designed to combat the basic genetic cause of SMA by replacing the defective or missing gene with a single infusion to stop the progression of the disease.

Instead of having to go to the hospital every four months, Hannah would have hope for a carefree life with just one infusion. For an independent future that would be safer, even if we were no longer there.

Therapy

So far, however, "Zolgensma" is not approved in Germany, so the cost of the drug, amounting to 2.1 million US dollars, is not covered by our health insurance company.

In addition, time is running relentlessly against us:

Treatment is limited to children under 2 years of age. This means for Hannah that we must have carried out the therapy by the beginning of March 2020.

We cannot hope and wait for timely approval in Germany or for the costs to be covered.

A MAYBE is not enough for our child's life. We want to act NOW!

Hannah is ready to take the first steps in life. But she cannot do it on her own. She depends on help from all of us.

BANK TRANSFER:

Bank für Sozialwirtschaft
Receiver:
Deutsche Muskelstiftung
Account:
873 9003
BLZ:
660 205 00
IBAN:
DE27 6602 0500 0008 7390 03
BIC/SWIFT code:
BFSWDE33KRL
Usage:
Hannah

PAYPAL:

Email:
info@muskelstiftung.de
Option:
Freunde & Famile
Usage:
Hannah