TS mom forms Facebook support group to help other parents
When Brittany and Ryan Schwaigert learned their son, Greyson, was diagnosed with Tuberous Sclerosis Complex at 3 months old, the news was devastating.
The Schwaigerts first noticed Greyson’s TS symptoms when he began having spasms. At first they thought it was nothing serious, but when the couple began talking with their parents and researching online, they learned he was suffering from infantile spasms. The Schwaigerts took Greyson to Methodist Germantown and an MRI revealed tubers on his brain and he was diagnosed with Tuberous Sclerosis. Greyson also has tumors on his eyes, skin lesions and suffers with polycystic kidney disease.
“It’s like a Mack truck hitting you,” Brittany said. “You Google it and it’s the scariest thing. We didn’t know what to expect. We didn’t know what would be in store for him.”
But the Schwaigert family was determined to fight back. They wanted to help their son live a normal and healthy life. It was a disease the Collierville, Tenn., family never heard of prior to their son being diagnosed more than seven years ago.
“We sat down and said, ‘This isn’t going to get the best of us. We’re not going to let this win,’” Brittany said. “So we started getting really active with the Tuberous Sclerosis Alliance … we started educating ourselves as much as possible.”
That education led Brittany to reach out on social media, connecting with other TS parents from around the world and listening to their stories and heartaches. Soon after, Brittany created the TS Mommies Facebook group, a place where TS moms can offer support, discuss medical questions and share their feelings.
In addition to information the Schwaigerts learned from other TS parents, the couple decided John Bissler, MD, director of Le Bonheur’s Tuberous Sclerosis Center of Excellence, and James Wheless, MD, chief Le Bonheur neurologist and co-director of the hospital’s Neuroscience Institute, should care for Greyson’s TS. Under their watch, Greyson’s epilepsy and polycystic kidney disease is kept under control via medication and his angiofibroma are being treated with specially formulated cream created by Le Bonheur physicians.
“The doctors have been very progressive with his care,” Brittany said. “They don’t ever hesitate to change his medication if it isn’t working.”
Greyson continues to visit his doctors twice a year for EMU stays, MRIs, EEGs and kidney ultrasounds. His brain tubers remain unchanged, and over the years the cysts on his kidneys have grown minimally.
Since starting TS Mommies three years ago, the group has grown from 20 mothers to nearly 1,200 members. The Schwaigert family said the group’s success is due to mothers being able to speak freely about their child’s disease without judgment.
“A lot of them are coming there for support because they have nowhere to go,” Brittany said. “It is such an amazing place for mothers to talk with other mothers and those other mothers can tell them that they are not crazy, and that’s so important.”
While the group is only open to TS mothers – no grandmothers, aunts or other female relatives – Brittany, who is Le Bonheur’s Tuberous Sclerosis Alliance ambassador, said one day she may start a Le Bonheur-only TS Mommies group. A group for fathers with TS children also is a possibility. Because of the care the Schwaigert family received at Le Bonheur, both Ryan and Brittany now volunteer on the hospital’s Family Partners Council.
The group, Brittany said, has helped countless families from around the world, including Heather and Chris Lens of Westville, Okla.
“The information we gained and the support we gained has been incredible,” Heather Lens said. “Being able to meet people online and getting valuable information so quickly was a huge help. It was so nice knowing someone else had been there and done it and that we could get through it and be okay.”