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Hello
I hope this letter finds you well. We are collect money to next year to buy life saving treatment our son Kevin-Sander. And we needs donations
Our son has an extremely rare genetic disease. Suffering from Maroteaux Lamy Syndrome, Kevin-Sander needs the help of good people to continue buy his life-saving treatment.
Without treatment, the disease worsens rapidly, and the child loses sight, hearing, mobility.
The annual cost of our son's treatment, including VAT, is 40,000 eur a year.
Otherwise, our little boy is doing very well: "Kevin is a curious and happy boy - the treatment works and there are no side effects at all," most of all, our little boy likes to go outside in any weather because he loves exercise and he doesn't miss a puddle to jump in. We are once again asking for the help of good donors so that the child survives!
According to the child's attending physician and geneticist, the drug effectively stops the progression of the disease, and Kevin-Sander can live a completely normal, fulfilling life. Treatment with Naglazyme is lifelong, but with it the child can grow up and go to a normal school. Treatment must not be interrupted, as the rapidly developing damage (for example, bone changes and loss of vision) cannot be reversed.
Without medication, the disease causes rapid bone and joint damage, vision and hearing loss, heart failure, and damage to internal organs. Kevin-Sander has been diagnosed with a severe form of the disease.
We are still in a situation where a child diagnosed with a rare disease. There is a life-saving drug approved by the European Medicines Agency and it works, but our child will be deprived of it once again. We must again ask for help from big-hearted donors, because the child's treatment must not be interrupted!
Dear donors, Please give life to our son Kevin-Sander! Please Share and help our son.
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