Local family receives great support in seeking cure for Alport Syndrome

By Marianne Mueller

REPORTER

In 2009 brother and sister Gavin and Taytm Mylin were diagnosed with Alport Syndrome.

Alport affects one in 50,000 children and is an inherited and progressive disease. Kidney disease, hearing loss, and loss of eyesight are all symptoms found in carriers. Eyesight issues may be less common in some instances. The disorder was first identified in a British family by University of Edinburg Medical School graduate Cecil Alport in 1927. Alport Syndrome is caused by a defect in IV collagen which is a structural material needed for normal function of different parts of the body and is found in ears, eyes and kidneys.

Gavin, who is now 12 years old, will require a kidney transplant as early as in his teens.

“Gavin’s kidney function is still good, but he is already experiencing some hearing loss,” said his Mother Amy. Male carriers are more apt to succumb to debilitating effects of the disease.”

“Ten-year-old Taytm is not showing any effects of her Alport yet. Girls don’t typically show signs of kidney failure until later in life,” said Amy.

Since Alport Syndrome is so rare, there is limited funding available for research and no cure has been found to date. In loving outreach family, friends and community came out in full support of the Mylin children and family on Saturday, July 16 at a “Fighting Alport Syndrome” fundraiser.

Josh Taylor served as the events Master of Ceremonies hours of fun all at the Ledges pool.  A bouncy house, games and music, pizza, snow cones, cotton candy, beverages, silent auction, and raffles only tapped the surface of fun had by all.

Magician Jack Purcell captured attention as he entertained by performing various magic tricks. More opportunities to create smiles happened at a face painting table.

One special silent auction item came in the form of a six-burner gas grill from Lowes. An outstanding donation up for bids came in the form of a ride to school in a fire truck. This unique offer came courtesy of Harlem-Fire and South Beloit Fire Departments.

A 50-50 raffle was held with 50 percent of the funds going directly toward Alport research.

Througkout the family’s journey, the Mylin family has made many connections.

“When the Mylins were hosting their first fundraiser four years ago, we saw it on the Alport website. We came out for the event where I introduced myself, and we have been friends since then,” said Melissa Svoboda whose family returned to this year’s pool party in a show of support traveling from Wauconda, Ill.

The Svoboda family knows firsthand what the Mylin family is facing as members of the Svoboda family also live with Alport Syndrome.

The 2016 Alport fighting Alport Syndrome fundraiser brought in $11,023 to be used toward further research in hopes of finding a cure.