Nicolas Messina Mayor is a bubbly 7-year-old full of life and full of love. He loves to laugh and dance and his wheelchair doesn't stop him.
Sadly, Nicolas was diagnosed with Duchenne Muscular Dystrophy (DMD) at 4 years old, it is a fatal genetic disorder that causes progressive muscle degeneration and muscle weakness. It is very rare affecting 1 in every 3,500 boys and there are less than 200,000 cases in the US every year. Boys with DMD have an absence of dystrophin, which is a protein in the muscles which helps bind skeletal muscle fibers together which allows for muscle movements like walking, jumping, and overall movements as well as maintaining a healthy heart.
With DMD boys experience progressive loss of strength leaving them wheelchair bound with many other impediments such as difficulty breathing, a weakened heart, difficulty moving to inability to move hands and arms. Currently there is no cure to DMD and the only treatment available in the US is steroid treatment with Prednisone or Emflaza and modified physical therapy as someone with DMD would not benefit from normal physical therapy. Nicolas has previously been on Prednisone experiencing worse side effects than improvement. He gained 22 pounds in less than 3 months and was having more difficulty moving due to the weight gain instead of having improved movement. He was experiencing mood changes, and digestive issues. After speaking to his doctors we came to the conclusion that slowly stopping the steroid use would be more beneficial to him.
Boys with DMD are typically wheelchair bound between 10-12 years of age, Nicolas is currently wheelchair bound at 7 years old with his DMD progressing rapidly. We are asking for your help as we have found a promising cellular regeneration therapy treatment outside of the country, though this treatment is not a cure it has proven to help other boys with DMD have a better quality of life.
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