Give Hope to Adam!
Aid his recovery and help him get a chance for a long and happy life!
WHAT CAN HELP ADAM RECOVER?
Adam’s life can only be saved by a therapy available exclusively in the United States and Dubai. The gene therapy called Elevidys is his only chance to live a full life and recover. The cost of this treatment is $2.9 million, which is approximately 1.1 billion HUF.
The story of Adam
Major Adam was born in August 2015 in Halábor, Transcarpathia.
During the first three years of his life, he developed without any issues, meeting all age-appropriate milestones. At the age of three, he started kindergarten, which he loved very much. His constantly smiling and cheerful personality quickly won the hearts of everyone around him.
Before Adam’s fourth birthday in 2019, after a mild cold, he began having difficulties climbing stairs. His parents requested genetic testing, as his mother’s brother had tragically passed away at the age of 17 due to Duchenne muscular dystrophy. On January 31, 2020, their worst fears were confirmed — Adam had inherited what was then believed to be an incurable disease.
Following this life-changing news, the family made a big decision. In the summer of 2021, they permanently moved to Hungary, settling in Besenyőd.
In the summer of 2023, the United States approved Elevidys, a gene therapy treatment that can stop muscle deterioration and slow the progression of the disease. Starting in the summer of 2024, children older than four years can also receive the treatment, not only in the United States but in Dubai as well. The cost of this life-changing therapy — excluding additional expenses — is $2.9 million, which is approximately 1.1 billion HUF.
You can also help raise this enormous amount and give Adam a chance for a better future!
United for Adam Foundation
Key information about this disease:
Duchenne muscular dystrophy (DMD) is a hereditary disease characterized by progressive muscle weakness and the gradual damage of muscle cells. The muscle cells are replaced by fatty tissue and connective tissue, which are unsuitable for muscle function. As a result, the patient becomes increasingly weaker, eventually finding it difficult to care for themselves. By the age of 10-12, children with the disease are forced into a wheelchair, and a few years later, the disease also affects the heart and respiratory muscles. The life expectancy of individuals with the underlying condition is only 20-22 years.
Adam's treatments
Adam requires continuous steroid medication to slow down the progression of the disease. In addition to steroid treatment, Adam also attends physical therapy and medical massage. He participates in regular check-ups: in neurology, cardiology (heart ultrasound, EKG), pulmonology (respiratory function), and rehabilitation.
Since the summer of 2022, upon medical advice, Adam has been using AFO (ankle-foot orthosis) braces daily. This device is custom-made and helps to keep his ankle at a right angle and stable.
In January 2024, he received an active wheelchair on medical advice, which he will use in the long term.
Thanks to Bethesda Children’s Hospital, Adam is participating in the NIV (Non-Invasive Ventilation) home ventilation program. Since July 2024, he has been using a nighttime respiratory support device, as the latest sleep study showed weakness in his respiratory muscles.
Be part of a supportive community and help support Adam's recovery now!
Every donation is an important step towards the treatment that means recovery!
You can support Adam at the following account number:
“UNITED FOR ADAM” FOUNDATION (“ÖSSZEFOGUNK ÁDIÉRT” ALAPÍTVÁNY)
10300002-13877454-00014909
IBAN: HU46 1030 0002 1387 7454 0001 4909
BIC (SWIFT) MKKBHUHB
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