Precious First Steps
The birth of a new baby is an exciting time for any family. When Grayson was born in March 2020, Stephanie and her husband Matt were overjoyed. But when they brought Grayson home from the hospital, they knew that something wasn’t quite right.
“We noticed some eye rolling and head dropping,” Stephanie said. “There were red flags. Grayson was born with pigmentation differences on his hair and skin.”
Grayson’s family returned to the hospital and spent weeks with him as doctors tried to figure out what was causing Grayson’s symptoms. The doctors soon diagnosed him with infantile spasms, a rare disease that affects babies in their first year of life.
“I felt like I was in The Twilight Zone,” she said. “It was a really big shock and change for all of us.”
When Stephanie heard how much Grayson’s treatment would cost, she knew it was out of reach for their family.
“The cost of treatment is like another mortgage on the house,” she said. “My husband has a decent job, but the insurance is still so expensive. The financial burden was so much.”
Their case manager at the hospital suggested they apply to The Assistance Fund’s (TAF’s) Infantile Spasms Copay Assistance Program. The program provides financial assistance for out-of-pocket costs for prescribed FDA-approved treatment, such as copays, deductibles, and coinsurance.
“It was just such a weight lifted off of our shoulders,” Stephanie said. “It’s a miracle TAF exists.”
Stephanie took a leave of absence from her job as a speech therapist to care for Grayson and take him to his doctor’s appointments. She also began to document the highs and lows of her family’s journey by starting a blog.
“I didn’t want people to make judgments or assumptions since he looks a little different,” Stephanie said. “By connecting with other families, we don’t feel like we’re in this alone.”
She says she hopes Grayson will one day be able to read the blog and appreciate the steps his family took.
“It all started as a letter to him,” she said.
Now, Stephanie and her family are eager for Grayson to start interacting with more kids his age and to resume their travels post-pandemic. Grayson couldn’t attend daycare during the pandemic, given his compromised immune system. But their home near New York City is ideal as they restart travel.
“We’re big foodies,” she said. “We love being able to drive in and go to the Italian festival and hang out at friends’ apartments.”
Stephanie is ready to get back to work and enjoy watching her kids grow. Assistance from TAF has been a relief, she said, in what was otherwise a chaotic year.
“We’ve been taking it day by day, moment by moment,” Stephanie said. “TAF has been such a help for our family in every way.”
