Michael 5, Kalel 4, and Sebastian, 3, have Mucopolysaccharidoses Type II. It’s known as Hunter’s Syndrome, where the body lacks the ability to rid itself of cell waste. It leads to toxicity in the body and a host of degenerative and developmental problems.
The disease is rare, with less than 500 cases in the US and 2,000 worldwide. The average life span is 12-14 years of age.
“The prospect of having to bury your own child is just difficult to wrap your mind around,” said Sebastian’s father, Mario Estevez.
One of the symptoms which is noticeable is an arthritic complication in the joints. Each of the boys has rigidity in their hands and feet. Their fingers have begun to curl and have what is called “claw hands.”
The beautiful news is that there is a cure. Doctors and researchers at Nationwide Children’s Hospital in Columbus, Ohio, developed an infusion which gives the body the enzymes to cure the body of Hunter’s Disease.
But these Broward families can’t celebrate. While a cure has been developed to save these boy’s lives, money stands in the way. As a result, these boys will continue to die.
Nationwide Children’s Hospital needs $2.5 million to begin trials, and $1 million needs to be raised by the end of this year. These Broward families have raised roughly $45,000 through numerous fundraisers. Other families afflicted with Hunter’s Syndrome across the country collectively raised $200,000.
The push is on to raise enough money to begin the trials and FDA approval. But the clock is ticking.
Published at 5:26 PM EDT on May 9, 2017 | Updated at 5:55 PM EDT on May 9, 2017
Source: Broward Families Working to Save 3 Boys Suffering From Same Rare Deadly Disease | NBC 6 South Florida
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