Poster Child From Southlake

Friday, Sep. 12, 2008
Southlake Girl Becomes Poster Child for PKD Walk
By Nicholas Sakelaris
Staff Writer

jeff wood/contributing PHotographer
6-year-old Lauren MacMillan, of Southlake, poster child for this year’s North Texas Walk for PKD on Sept. 20 in Town Square, poses with her dog, Stella. Lauren was diagnosed with the incurable disease two years ago.

Lauren MacMillan plays, jumps and smiles like any first-grader at Rockenbaugh Elementary School.

You would never know that she has a serious, incurable disease. You cannot tell that even now cysts are growing on her tiny kidneys that could someday cause severe pain and infections from a little-known disorder called polycystic kidney disease.

Her mother, Judy, wouldn’t have known either, if not for a fateful trip to the doctor’s office two years ago. A sonogram revealed the cysts. The family was in disbelief, because the disease is usually hereditary and they have no known family history of it.

"I’d never heard of ... PKD," MacMillan said.

PKD affects more than 600,000 Americans and efforts to find a cure are severely underfunded, said former Southlake Mayor Pro Tem Carolyn Morris. Morris’ first husband died of the disease and her daughter inherited it.

The disease receives less research funding than other genetic disorders such as Huntington’s disease and cystic fibrosis, which are far less common, Morris said.

The PKD Foundation will host the North Texas Walk for PKD on Sept. 20 at Southlake Town Square that will raise money and awareness. For the fifth year in a row, Morris will be the chairperson for the walk.

Registration starts at 8 a.m. at Rustin Park, 1400 Main St. The children’s walk starts at 9 a.m. and goes from Rustin Park to the north side of Town Hall. The main walk takes two one-mile laps around Southlake Town Square beginning at 9:30 a.m.

There will be healthy snacks, clowns, face painting, free T-shirts and prizes for the teams that raise the most money and the biggest teams.

Watermere at Southlake, a new upscale retirement community, donated $10,000 as title sponsor of this year’s walk. Meteorologist Larry Mowry from Channel 11 will be the master of ceremonies.

Since Lauren’s diagnosis, the MacMillans have educated themselves and are doing all they can to fight back. This year, Lauren, a little girl with a big smile, was chosen as poster child for the this year’s event.

MacMillan encourages her daughter to eat fruits and vegetables and won’t let her play contact sports. She also monitors Lauren’s blood pressure, because PKD can also cause brain aneurisms.

"Knowing that she does have this, I monitor her diet as closely as possible," MacMillan said. "Every day I worry. Has she had enough water? Has she had too much salt or proteins?"

Adult-onset PKD, also known as autosomal dominant PKD, usually goes undetected for years unless someone looks for it, as in Lauren’s case.

Morris can empathize with the MacMillans because her daughter, Jamie, underwent a kidney transplant to save her life two years ago. Her first husband, James Hill, was diagnosed at age 25 and he fought the disease for 22 years until he died in 1985 at age 47.

"It’s horrible to think that your child has this disease that’s going to destroy their kidneys and it could destroy their life," Morris said.

Last year’s walk raised more than $88,800, funding two research grants.

Researchers have identified the gene that causes PKD, the first step to developing a treatment and a cure.

"It’s very optimistic to think that there could be a cure within 10 years," Morris said. "That’s very exciting."

For families like the MacMillans, finding a cure is like racing against time before the disease takes hold and they have to consider kidney dialysis or a transplant.

Many PKD patients also face job discrimination because of the high insurance risk. Morris and other PKD volunteers lobbied the U.S. Legislature to pass the Genetic Information Non-Discrimination Act [GINA], which protects patients’ genetic information from health insurers and employers.

"Knowledge is power. Especially in this disease," Morris said. "You have to be your own advocate."

To sponsor a team or to create one, see www.pkdcure.org.

nsakelaris@alliancenews.net 817-329-7700, ext. 104
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