Real Superheroes In Action

The MPS SuperHero Foundation’s logo, created in honor of Kalel

MPS SuperHero Foundation

The MPS SuperHero Foundation’s logo, created in honor of Kalel

Ana Brito, Author

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After the diagnosis of their son with MPS II in 2016, two South Florida parents founded the MPS SuperHero Foundation in the hopes of raising awareness for the rare disease and promoting the development of a potential cure. Parents Monica Anya and Avram Joseph, and their son, Kalel, were soon joined by two other families plagued by the same grim and desperate situation.

 

“Although this disease is so rare,

Three little boys that live within miles of each other are fighting to find a cure.”

— Monica Anya

,” Monica commented, speaking at one of the many fundraisers held by the foundation.

 

MPS II, also referred to as Hunter’s Syndrome, is a severe genetic disorder that almost exclusively affects males. Those suffering from the disease lack the ability to break down glycosaminoglycans, or GAGS, which consequently builds up in the cells around the body, triggering various debilitating symptoms. Children affected by the disease often have bloated abdomens, coarse facial features, and large foreheads, as well as exhibiting signs of hearing loss, stunted growth, and impaired intellectual ability. The disease is incredibly grave and life-threatening, with the average life expectancy ranging from 10-20  years old.

 

Currently, there is no definite cure for MPS II. However, patients do have the option to undergo frequent enzyme replacement therapy, which substitutes the protein their body is naturally unable to produce. But treatment is painful, and it fails to address any of the disease’s effects on the brain and cognitive development.

 

Fortunately, doctors and researchers at the Nationwide Children’s Hospital in Columbus, Ohio recently derived a possible cure: an infusion given to the patients to supply them with the enzymes needed to cure them of MPS II. But while the cure needed to save the lives of these children exists, $2.5 million is needed to fund the clinical trials for it.

 

“The issue is, because it’s an academic study, there’s not a pharmaceutical company involved, so it’s really up to us to get the money to make it happen,” said Jenn Estevez, whose six-year-old son Sebastian has MPS II.

We couldn’t wait for a miracle to happen. We have to make it happen.”

— Monica Anya

The three families set out to raise the money needed to save their little boys. Through fundraising events, such as the annual Kickin’ for A Cure Kickball tournament and the MPS SuperHero 5K Run, along with partnerships from local businesses and support provided by donations from the community, they have successfully raised over $2.4 million dollars as of January 27th.

 

With 96% of MPS SuperHero Foundation’s goal reached, the future looks bright for these families actively working to combat the disease.

 

“We knew we had to do something. We couldn’t wait for a miracle to happen. We have to make it happen,” said Monica.

 

Those wishing to join the fight against MPS II can donate here.

Ana Brito, Author

Ana is a Sophomore in the IB academy and an author for the News category. She’s an avid writer with a deep fascination for the world around her and a...

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