12-year-old Aidan Carter has Hunter syndrome, also known as mucopolysaccharidosis type II (MPS II), a rare, progressive condition that impacts mental development, appearance, physical abilities, and organ function. In order to receive the best possible treatment, he has to move to California to participate in a clinical trial.
About Hunter Syndrome
Hunter syndrome, also known as mucopolysaccharidosis II (MPS II), is an extremely rare, genetic disorder caused by a lack of the enzyme iduronate 2-sulfatase. This enzyme is responsible for breaking down complex molecules, and without it these molecules build up and damage the body. This damage gets progressively worse as time passes, and it eventually causes permanent damage that affects appearance, mental development, organ function, and physical abilities. This disorder is inherited through a chromosome from the mother and is far more common in males than females.
Due to the buildup of harmful molecules, symptoms do not begin to present until age two to four. They can be mild to severe depending on the person who has it. Symptoms include an enlarged head, thicker lips, a broad nose with flared nostrils, a protruding tongue, a deep or hoarse voice, abnormalities in the skeletal system, an distended abdomen due to enlarged internal organs, chronic diarrhea, white skin growths, joint stiffness, aggressive behavior, stunted growth, and delayed development. Along with these symptoms, Hunter syndrome can bring other complications depending on its severity. Respiratory, cardiac, brain, nervous system, skeletal, and connective tissue complications are all possible when one has this syndrome. There are currently no cures for this disorder, and treatment is symptomatic.
Aidan and his family are moving to California for six months so that he can receive an experimental treatment in a clinical trial. While they know that it is best for Aidan’s health, it’s still a stressful, cross-country move from the family’s home in Stratham, New Hampshire.
To help reduce this stress and send love to the family, there was a socially distanced send-off right before their move. Relatives, police officers, fire fighters, and friends all drove by to give their best wishes to the Carters.
To read more about their story, click here.