HUNTSVILLE, Ala. — One man who suffers from Mucopolysaccharidosis, or MPS, has outlived what most individuals with the syndrome do live.
MPS is a rare genetic disorder where the body is missing a certain enzyme. The sad reality is, those suffering with the disorder are not expected to live past their teens.
Brandon Hager turned 23 in April and his mom says he’s doing really good.
The specific disorder Brandon suffers from is Sanfilippo Syndrome Type A, or MPS III. Sanfilippo Syndrome is caused by a defect in a single gene. It is an inherited disease of metabolism that means the body cannot properly break down long chains of sugar molecules.
But that’s the thing. That’s the only difference between those suffering from the disease and those who are not… one missing enzyme.
“Brandon deals with multifaceted things every single day of his life,” says Valerie, his mom. “But despite those things, he’s still very happy. He’s still very cognitive.”
The syndrome affects Brandon’s speech, but he is still able to communicate with an “eye-gaze device.” Brandon can respond to questions and even talk about himself through this device. The device follows the gaze of an eye to choose an option for the device to read out loud.
There is not a cure for MPS yet, but Valerie hopes to educate people on the need for research. She hopes there will be a cure one day, whether it’s for Brandon, or anyone else suffering with MPS.
May is a special month for the National MPS Society. The Society and its members celebrate International MPS Awareness Day on May 15.