Amelia Pleet is a normal 8 year-old. She loves her family and going to school, puzzles, painting and drawing, going outside, and playing cards, board games and video games.
But unlike most other kids her age, the soon-to-be third grader is facing difficult health challenges.
“When Amelia was born, she was happy, healthy, and little,” said her father, Jason. “One day I was holding her and I noticed, ‘you have a bump on your shoulder that I don’t.’”
Just shy of three years old, Amelia’s mom Sarah scheduled an appointment with the chiropractor since she knew they could get in first thing.
“The chiropractor knew right away it was a tumor and called orthopedics to get us in immediately. Nothing could have prepared us for what we saw on the x-rays,” recalled Sarah. “There wasn’t just one bump. I remember my heart sinking in my chest.”
The discovery led to a life-changing diagnosis of a rare bone disorder, one that requires regular surgeries to correct Amelia’s growth and remove extra bones that grow in her joints.
With Multiple Hereditary Exostoses (MHE), bone tumors continually form near almost all of the joints in her body, including hands and wrists, shoulders, hips, knees, ribs, and spine. “A specialist at Shriners said she is one of the worst cases he’s seen,” said Sarah. “Children with MHE typically have 5-8 tumors. Amelia has dozens located in or near almost every joint.”
Amelia’s first surgery was on April 29, 2015 to remove a large growth on her shoulder. This was followed by spinal surgery to remove a growth on her C3 vertebrae, and another to remove three bumps from inside of her left wrist so she could rotate it, something she wasn’t able to do for a long time. Her most recent surgery on July 11th was to remove two large tumors just below her knees, and to put a plate in one knee and screws in each ankle to correct her ankles, which were bowing inward.
“The worst surgery was my neck,” said Amelia. “I couldn’t walk when I was in the hospital. I had to miss school for three weeks.”
This was the hardest surgery for Jason and Sarah to watch Amelia go through as well. “I remember Amelia telling me ‘I want to go home mommy’ and I had to tell her I couldn’t take care of her yet. She was in so much pain,” said Sarah. “I broke down at one point just sobbing because there wasn’t anything I could do for her.”
As Amelia grows, these extra bones require surgical removal and correction of the growth in her limbs. Some are harder to remove than others. Eventually, Amelia’s left forearm will need to be surgically lengthened, and her hip will require surgery in order to allow her to walk normally since a tumor is pushing it out of socket. With no bend to her leg bone, that means pressure is being placed in the wrong spot.
Twice a year, Amelia travels to Shriners Children’s Hospital in Minnesota for checkups and to constantly monitor her mobility and growth. “I just hope we can wait long enough to where Shriners is able to help us,” said Sarah. “This is why we were researching specialists around the country, and how we found a doctor in Florida that has done this exact tumor removal in children Amelia’s age.”
Insurance didn’t allow coverage out of network, but luckily Shriner’s was available. “Thank God there are places like Shriners to help families with children that have rare conditions. They have lifted a huge burden off our shoulders,” Sarah said. “We found doctors that have treated many cases of MHE. We finally have someone to put our trust in.”
Amelia’s parents are not new to medical issues. When a baby, Amelia’s older brother Isaac was born with Craniosynostosis and had to have surgery to correct the growth of his skull.
“Nothing could ever prepare a parent to see your baby go through so much pain,” said Sarah.
“For a young family, it was very expensive,” said Jason. “After years of trying to pay off medical debt, we finally had to file bankruptcy.”
Working odd jobs and managing a small business, Amelia’s parents added onto their home in an effort to accommodate her with a first floor bedroom and bathroom to use when recovering from her various surgeries.
It’s affected her family in other ways as well. “It’s hard to play with Millie now,” noted her brother, Isaac. “And I have to do her chores.”
“I like that!” Amelia said.
At school, she hasn’t been able to participate in running-related sports or sit “criss-cross-applesauce” with her classmates because of her health challenges. As she grows up, the family will continue to cope with the immediate costs of medical treatment, a stress that’s taken its toll.
Amelia’s bone growths will stop when she stops growing, but the spontaneous mutation will be a lifelong battle. Then, she will experience what feels like severe arthritis, and would most likely pass on the condition to any children she would have.
“Amelia’s situation isn’t going to go away,” said Sarah. “If people think of their health care out-of-pocket costs and multiply that by 20, because it’s every year, that’s what we’re dealing with. What would you do with another $200 or $300 a month for the next 20 years? We have to try to set that side to make sure that we can pay for her care. The financial stress is suffocating.”
Further challenging the family’s finances, in November 2017, Sarah was diagnosed with cancer and began treatments in early 2018. “I’m just glad it was me,” she said. “I don’t think I could take any more heartache watching my children go through medical issues. At least I could fight this myself instead of watching from the sidelines not being able to take away their pain. I have a newfound respect for cancer patients going through radiation and chemo.”
“We set up a GoFundMe on a whim, in a hope to get a little bit of extra help. And it all helps. Every little bit helps,” said Jason. “It helps pay for the trips to see specialists in the Twin Cities and down in Florida.”
“Every little bit helps,” echoes Sarah. “Even just spreading the word. If this gets out wide enough, it might help a whole lot.”