When Timothy and Brittany’s four-year-old daughter – who is aptly named Grace – started experiencing excruciating pain in her legs, they did not know what to do…or say…or think. And, in many ways, they still do not know.
But they found comfort at the Ronald McDonald House.
“Every family is here because something is wrong with their child; it is devastating,” said Brittany. “But the House gives you space to feel, and space to heal.”
As Grace played with other children – an increasingly rare occurrence since her initial hospital stays and unofficial diagnosis – her mom and dad could not help but smile…and cry. Their energetic, joyful little girl has come alive since they arrived at the House.
“I want to share about our experience because it could help someone else,” Brittany said. “The House is making a big difference, and it means the world to the people who need it.”
Grace’s medical journey began six months ago, when pain in her legs made it difficult to sit, let alone walk. While it is not unusual for children to experience discomfort as they grow, her leg movements were so peculiar, and her screams were so intense…Brittany and Timothy knew something was very wrong.
“It’s so hard to watch your child struggle, and not be able to fix it,” Brittany said.
Following advice from the family chiropractor, Grace was admitted to the Emergency Room. After an exhausting series of tests – strep, x-ray, MRI, and more – she was rushed to a larger hospital by ambulance. It was an urgent matter.
“The doctor said, ‘I don’t know how to tell you this, but she has swelling in her brain and spine, and it can be deadly.’ It was a very dangerous situation,” said Brittany.
The news was devastating for Brittany, both as Grace’s mom, and for her personally. There is a history of brain cancer in her family, and she had a medical journey as a child as well.
Doctors said it could be transverse myelitis – a rare neurological condition where the spinal cord is inflamed due to a virus and attacks the protective coating on the spine. And it was progressing very fast. But a steroid prescription would slow it down and reduce pain and inflammation, and after only 24 hours, Grace was up and playing again.
“Because treatment was working and she was feeling better – and we had a plan – we were confident leaving the hospital,” said Brittany.
The dosage was high for an adult, let alone a four-year-old child, and Grace received it for nearly one month. But as she tapered off…all symptoms returned. They considered an even higher dosage, but Brittany said it was not treating her daughter’s condition effectively.
They rescanned and discovered both brain and spine swelling were down, which was good, except…it meant Grace didn’t have transverse myelitis. Both the pain clinic and the neurology clinic did not know how to proceed; they had done all they could do.
“But something is wrong,” Brittany said. “What is affecting my daughter, because it could impact her whole life. We need to find out.”
The search for answers led the family to Mayo Clinic in Rochester and, in effect, the Ronald McDonald House. After an initial round of scans and tests, Timothy, Brittany, and Grace checked into the House for a five-night stay.
“Even if you’re here for a short time, the House loves you and your child all the same,” said Brittany.
Grace made the most of the short time, keeping busy between House activities by gaming in the Game Room, coloring in the Craft Room, playing on the Outdoor Plaza playground, running around the Indoor Activity Room, and pretending to be an astronaut in the Playroom. And she did it all with a chocolate chip cookie in her hand.
“The small comforts make a big difference,” Brittany said.
During their week in Rochester, Grace received multiple scans, 35 blood tests, and an electromyography (EMG) – a diagnostic procedure to assess the health of muscles and the nerve cells that control them. She often returned sad, tired, and anxious, but “walking into the House was almost always the first time we saw her smile that day.”
The family is still seeking answers, but it is likely either myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) – an autoimmune condition where your immune system attacks proteins in the protective cover around your nerves – or pediatric multiple sclerosis (MS) – an autoimmune condition that disrupts communication between your brain and body. Either would present long-term challenges for Grace.
But being at the House has prepared her for that as well.
“She sees other kids going through medical challenges; it makes her more comfortable and confident in her own skin,” said Brittany.
“The fact that the House exists is remarkable,” Timothy said. “We are only here for one week, but some families are here for weeks, months, years…”
While the future is murky, Mayo Clinic is the world’s best hospital, and its Rochester location has one of the best pediatric MS treatment facilities in the country.
“We do not know what the rest of her life looks like, but now we know that we have a community of support at the Ronald McDonald House,” said Brittany.
