During the month of August, Real World Health Care will take a short break from focusing on medical breakthroughs and the researchers who are shaping the future of medicine. We will instead bring you a special series from our sponsor, the HealthWell Foundation, about what happens when families cannot afford the medical treatments their children desperately need. The families we will profile have turned to the Foundation for help, through the HealthWell Pediatric Assistance Fund®, the only fund of its kind.
Did You Know?
HealthWell’s Pediatric Assistance Fund is the first of its kind. It was opened in response to families who had nowhere else to turn.
Since its launch in 2013, HealthWell’s Pediatric Assistance Fund has awarded more than $850,000 in grants to help more than 400 children start or continue critical treatments covering more than 90 disease areas and conditions, including ADHD, autism, cerebral palsy, Type 1 Diabetes, epilepsy, scoliosis, seizure disorder and many more. The Fund covers family cost-shares for surgical procedures, medical devices, counseling services, prescription drug copays and other out-of-pocket costs. This week, we’d like you to meet Anna, who was born with a rare disorder affecting the brain.
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. Eventually, 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.
Help kids like Anna get the medical treatments they desperately need. Ask your employer today about how your donation to HealthWell’s Pediatric Assistance Fund can go farther with a matching gift program. Donate today.