Real World Health Care Blog

Tag Archives: Sturge-Weber Syndrome

Help A Sick Child this Holiday Season

No family should ever have to wonder whether they can afford to save their child’s life, but that very question haunts families all over the country, every day. Through the HealthWell Pediatric Assistance Fund,® however, we are working to change that — because no adult or child should go without health care because they can’t afford it.

In just two months, the HealthWell Foundation awarded  grants of up to $5,000 to more than 20 families. These grants help children like Anna, who was born with a rare disorder affecting the brain known as Sturge-Weber Syndrome. A grant from Pediatric Assistance Fund eased the financial burden that Anna’s family faced after the radical surgery she underwent to help stop her seizures and stroke-like episodes. Now instead of having to choose between paying the bills and affording life-saving treatment, Anna’s family can focus on her recovery and watching her grow up.

Photo (left): Earlier this year, Anna had surgery for a rare brain disorder. Photo (right): Now she is back home, seizure free -- healing and growing.

Photo (left): Earlier this year, Anna had surgery for a rare brain disorder.
Photo (right): Now she is back home, seizure free — healing and growing.

We want to empower even more families just like Anna’s, so they can afford the treatments their children desperately need. That’s why, during this season of giving, we’re urging you to donate to the Pediatric Assistance Fund so we can help the next family, just in time for the holidays. 100 percent of your tax-deductible gift will go directly to patient grants and services to help children start or continue critical medical treatments.

In the following letter, Anna’s mom Mary from Delta, Pennsylvania, shares the challenges of affording care for their little girl and the big difference that HealthWell’s Pediatric Assistance Fund grant made in their lives:

Our daughter, Anna was born with a birthmark on her face and scalp. The doctors suspected there was more to the story. A CT scan of her head confirmed the diagnosis of Sturge-Weber Syndrome, a rare disorder affecting the brain. We spent the next few weeks as new parents trying to understand our beautiful little girl and the rare disease she had. When she was just 3 weeks old, she had her first set of seizures. It was terrifying to see her little body so out of control. She was admitted to the hospital and started on medication. The doctors were able to control the seizures, but never for too long.

Since that first seizure many years ago, we have celebrated many days without seizures and suffered through the days when they eventually returned. We changed medications, avoided activity that might over fatigue her, struggled through specialized diets and prayed for a cure. In January, Anna was scheduled to undergo a radical surgery to remove the diseased half of her brain. We knew this could offer her a future without seizures, but we also knew the incredible cost we faced.

With the help of the HealthWell Foundation, Anna had her surgery. She is back home, seizure free – healing and growing. Our family has been able to focus our attention on Anna’s recovery knowing the financial burden has been reduced.

We are so grateful for the financial support the HealthWell Foundation has offered to us. With their help, we are able to celebrate the wonderful little girl God has blessed us with and we look forward to her bright future.

Give to the Pediatric Assistance Fund today so we can make life a little easier for more families with children facing chronic or life-altering conditions.

Categories: Cost-Savings