We must hurry! We have only 3 months to gather such a sum of money!
If we miss the deadline, the chance will be lost forever!
We are waitng for a gene therapy which can be given to children who weigh not more than 15 kg. Xavier weighs 14.1 kg! This means we have only a few month’s time!
I beg you, please help!
Day by day we are overwhelmed by the paralyzing fear that our son will lose his last chance for an ordinary future, because we won't be able to pay those millions.... We don't have them... Every day the dream of a better life diminishes irretrievably...
The therapy, called the most expensive medicine in the world, costs 2 mln US dollars!
Doctors in Germany are waiting for the full amount to give him the gene therapy which will repair his malfunctioning SMN1 gene and will fully stop the progression of the disease!
Xavier was developing fine until his 8th month. Unfortunately, then everything collapsed and SMA appeared in our lives, standing for spinal muscular atrophy, which meant tears and suffering. Our child loses strength and muscles slowly disappear, also those responsible for breathing and his heart. Soon he may suffocate due to problems with the muscles or the heart muscles may stop working and we might lose him!Its disease that has no mercy and in a short time leads to inevitable death.
Xavier is under the care of a dietician, and only with proper diet and regular exercises we can prolong the time by a few more weeks... However, the child's development cannot be stopped. He grows, because he has to grow, and every toddler deserves a carefree childhood!
Xavier will never know the taste of an ordinary childhood. He won't be running around in the backyard or tearing his elbows off climbing trees. We had to learn to live from day to day. No plans, no dreams... We enjoy every moment together, because with this disease, you never know how many of them are left...