Thursday, March 28, 2024

Saving Sadie Rae: Volleyball tournament to benefit rare childhood disease

WILMINGTON — Sanfilippo Syndrome, or MPS III, is a mucopolysaccharide disease that has been likened to childhood Alzheimer’s disease. The disease is usually onset between three and four years of age, and is a progressive and fatal disorder.

There is no cure, but some are fighting hard to find one.

Sadie Rae Haywood recently had her first Birthday. Her parents have teamed up with Capt'n Bills and Cure Sanfilippo Foundation to raise money to help get her into clinical trials to cure the disease.
Sadie Rae Haywood recently had her first Birthday. Her parents have teamed up with Capt’n Bills and Cure Sanfilippo Foundation to raise money to help get her into clinical trials in an effort to cure the disease. (Port City Daily photo/COURTESY ASHLEY HAYWOOD)

In many ways, Sadie Rae Haywood is just like any other one-year old child (learn more about Sadie Rae and her family). After what her mother Ashley Haywood said was a normal pregnancy, Sadie began suffering respiratory complications and was rushed to ICU at Levine Children’s Hospital in Charlotte.

After being placed on a ventilator, Sadie developed a severe brain hemorrhage called IVH Grade III. Doctors were eventually able to get the hemorrhage under control by surgically implanting a shunt to relieve the issue.

Haywood says a distant cousin of her husband had been diagnosed with Sanfilippo Syndrome, and, confused by the problems their daughter was facing, decided to have her tested for MPS III.

Once this disease sets in, children begin losing motor skills and other simple abilities. One sign that this hereditary disorder is apparent are respiratory issues in infancy.

“They start slowly losing abilities,” Haywood said. “Most of the parents that I’ve talked to said that they can’t remember as well, and that’s kind of where it starts.”

“Then their speaking goes, instead of gaining more words they start losing words. Then they lose the ability to eat and feed themselves, go to the bathroom … it is pretty much exactly like Alzheimer’s,” she said.

When tests came back positive for the disease, they began seeking a solution.

The Haywood’s teamed up with the Cure Sanfilippo Foundation, a non-profit organization dedicated to finding a cure for this disease, to help raise funds to send Sadie Rae into clinical trials.

According to Haywood, these trials are incredibly expensive, and as of now there is only one in operation, with another opening up in the near future.

Erika Haywood, Sadie Rae’s aunt, has helped organize a 4’s Coed Volleyball Tournament at Capt’n Bill’s Backyard Grill restaurant on Market Street this Saturday, May, 13.

Tournament registration is $120 per team, with prizes ranging from cash,to “Yeti” coolers. There will also be a silent auction, a Chinese auction, and live music from 6-9 p.m.

Proceeds from the event will go to the Cure Sanfilippo Foundation, and will go towards sending Sadie Rae into these clinical trials in hopes for a cure.

To sign up, call (910)762-0173, or stop by Capt’n Bills in person at 4240 Market Street. Check in for the tournament begins at 11 a.m.

For more information on Sadie Rae, or to donate, visit savingsadierae.org, or follow Sadie Rae on Facebook at “Saving Sadie Rae.”

 

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