I am desperately raising money to help my cousin's baby boy, Milosz (Milo) Dolacki get the treatment he needs to cure his rare disease. Milo is now 7 months old (born Aug 2010), since birth he has remained hospitalized.
He suffers from a very rare disease - he cannot breathe or eat on his own, both these functions are currently operated by a machine, he has to be under 24h hospital supervision and could not survive without the apparatus.
Some of Milo's muscles are very weakened, he cannot lift his head or fully move his hands. Milo is a very smiley and happy baby, mentally fully there and developing like any other baby at his age. Only 5 reported cases like Milo's are know to date. Numerous tests and examination have not been able to draw sufficient diagnosis and recently we were told, that the diagnostic/treatment possibilities in Poland have been exhausted. There is no specialist centre in the country that would be able to help, we are therefore searching for such possibilities outside of Poland.
We have made an appeal for treatment to the Dubowitz Neuromuscular Centre, part of the Great Ormond Street Hospital in London. It's a leading clinical and research centre that specialises in neuromuscular disorders providing clinical assessments, diagnostic services, advice on treatment and rehabilitation. As you can imagine this kind of treatment is extremely expensive. Milo's medical transport from Warsaw to London itself goes well into the 5 digit figures, the cost for treatment and everything that goes with it is unimaginable.
I will be raising money to support Milo and his family to make his special transport to London and initial consultation possible. We would be very grateful for any donation, even the smallest help would mean a lot to all of us.
Please pass this on to anyone who you think would be able to help - besides financial support we are also looking for as much expertise advice as possible, as said it is a very rare disorder so any contacts are very helpful. Please e-mail me if you want to get in touch (andreez@hotmail.com).
Thank you.
Andreas
