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
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.
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.
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.
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.