Bátor Barnabás Fehér (16) and Táltos Tamás Fehér (14) are two wonderful boys.
They are brothers and both have been diagnosed with Duchenne muscular dystrophy.
This muscular dystrophy develops due to the fact that the organism lacks the protein which helps build the muscle cells. This is a genetic disorder. In their case the only missing tiny building block of
the dystrophin gene is exon no.43.
In general, DMD is recognised around the age of 5. They lose their ability to walk at the age of 10, and then the heart muscle also weakens, which does not promise a long life.
Barni and Tálti’s family have been doing their utmost and applying the therapies which are aimed to slow down the process with great discipline and consistency. They have never given up their faith and hoped for the solution. Science is now capable of gene therapy, research results tend to be more and more successful, thus the medical therapy also appeared. The point of the therapy is that micro-dystrophin is delivered to the cells, which that way become capable to produce protein allowing the muscles to develop.
Both Barni and Tálti are currently able to move, they only use aids for longer walks. They move around independently at school, use the elevator if needed and carry their school supplies in their rolling school bags.
They are two cheerful kids, study diligently and are really into adventures and travelling. In addition they do well with English as well.
The family has established a foundation for them, since the medical treatment is not yet a subsidized therapy in Hungary as of today. Relevant expenses are to be borne by the family. It is necessary to accept donations, and to rely on the community’s intention to help….
The foundation’s details:
Bátor Táltos Alapítvány
Sáfrány út 12.
Egerszalók, Hungary – 3394
Tax number: 19392095-1-10
www.batortaltos.hu
batortaltos@gmail.com
If you have the opportunity to support this great cause, either as an individual or as a business, you can do so to the following account number:
12033007-01984893-00100003
IBAN: HU96-12033007-01984893-00100003
Your selfless support is greatly appreciated – every contribution counts