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Make-a-wish renovates life for girl with one-in-a- million disease

By Alisa Brantz

The Sheridan Press

SHERIDAN — Sitting in a multi-colored, masterfully designed room with a bright-eyed, beautiful 13-year-old girl, surrounded by posters, pictures and even a life-size cardboard cut-out of the band One Direction, it’s hard to believe the amount of pain and struggle this teen has experienced in the past 25 months.

Grace Mather is sick.

Dermatomyositis and avascular necrosis are hard words for an adult to pronounce and even harder diseases for a growing girl to bear; but thanks to a loving family, a few smart doctors and the Make-a-Wish organization, Grace, her family and her bedroom, have all recently been renovated.

Grace’s story begins in Michigan, where she and her family are from, and where odd rashes got misdiagnosed as a skin condition.

In January 2012, the Mathers family relocated to Sheridan.

A few short months later, during their first Wyoming summer, Grace’s arms inexplicably locked up in a bent position and could not release.

They knew something more must be wrong.

Local pediatrician Dr. Mary Bowers knew right away what was wrong and Grace began treatment for Juvenile Dermatomyositis, what many call “JM.”

 

A rare condition

According to the Cure JM Foundation, the disease is a rare and life-threatening autoimmune condition primarily associated with weak muscles and a skin rash which affects only one to five children per million. Although medications can help alleviate the symptoms of JM, the disease has no known cure.

The primary medications used to treat the symptoms are corticosteroids, immunosuppressants and chemotherapy. Grace was put on high doses of the steroid Prednisone.

In November 2012, Grace took a turn for the worse and then around Christmas time, she became basically bedridden with muscle pain and weakness. Grace recalls experiencing muscle spasms so bad she would collapse on the bathroom floor not knowing what else to say beyond, “Daddy, make it stop,” before blacking out from the pain.

“As a parent, I’ve never experienced anything like that,” said her father, Jim Mather. “It was the only time in my life I’ve felt that helplessness because I couldn’t stop it. That’s my little girl.”

Grace spent that December, January and most of February in the hospital.

When she finally returned home in the middle of February 2013, she was confined to a wheelchair, unable to walk. She began taking physical therapy at Wyoming Rehab, unsure if she would ever teach her muscles how to walk again.

Her torso muscles had become so weak they couldn’t even fight gravity. Her physical therapy began with the simple act of her nurses holding her body in a seated position and then laying her down again. This small act caused painful spasms for Grace so she was put on heavy pain medications.

Through pain and perseverance, twice a day physical therapy did get her back on her feet, but that was just the beginning of her story.

While managing the JM, a rare side-effect of heavy steroid usage, avascular necrosis, took control of Grace’s bones.

Avascular necrosis is the cellular death of bone components, which primarily affects the joints at the shoulders, knees and hips and often leads to a total hip replacement in affected patients.

While on a recent trip to the Children’s Hospital in Denver to remove an IV port which had been installed in Grace for administering medication and drawing blood as the treatments weakened her veins, Grace received an unexpected bone marrow transplant in both hips and her left knee.

The day before the port removal was to happen, her doctor decided to move bone marrow from her pelvis to her affected joints.

Grace may need surgery on her right knee and perhaps total hip replacements later in life, but with the short life span of artificial joints that method is not recommended for children her age.

 

A family works together

When she came home from the latest trip to Denver, recently removed iv port in hand as a souvenir of the journey, Grace was once again wheelchair bound.

“My dad, my brother Josh and his friends Gavin and Garret would carry my wheelchair upstairs for me so I could be in my room,” Grace said.

They weren’t the only young companions to chip in and help the Mathers family out.

Grace’s sister Emily, now an 18-year-old student at Colorado Christian University in Denver, was a senior when this was all happening. Emily and her parents talked to the high school and she was able to take her classes at home to serve as caretaker of Grace during the day so their parents could continue to work.

“We became really close,” Grace said. “We ate healthy foods together and she took care of me and taught herself her classes. She’s really smart.”

Along with the bone trouble, the prednisone also caused Grace to gain a significant amount of weight and experience swelling in her face. Grace says the hardest part of the whole journey has been learning to accept herself.

“Sometimes it was hard for my sister and even my grandma to come see in the hospital and see me in pain,” Grace said, “but my mom was at the hospital every hour of every day. She even had work meetings in the children’s play area.”

 

Make a Wish

That wasn’t the only thing her mom did to support her. She also reached out to an organization called Make-a-Wish that grants wishes to children with life threatening conditions. Children are asked to make three wishes and the organization selects one to fulfill.

Grace’s first wish was, obviously, to meet her favorite band One Direction but she also wanted a trip to the Mall of America or a room make-over. Make-a-Wish made her grand designer and granted her a room make-over.

“I’ve always wanted to design my own room because my dad and I watch those shows together where they rehab houses,” Grace said.

She looked at Pottery Barn Teen catalogs for ideas, representatives from Home Depot brought her paint swatches and carpet samples and Grace created a purple and green masterpiece complete with her favorite piece, a large mirrored vanity from Pottery Barn.

“My dad was calling me Madam Designer,” she said. “It was really fun.”

Home Depot even installed specialty blinds and window film on the skylight of her new reading nook as Grace’s condition makes her highly sensitive to sunlight and UV rays, which can make her rash come back.

“I have a bad back from what I’ve been through and I had a twin bed before,” she added sitting on her oversized pillow-top mattress, “This is much more comfortable.”

Make-a-Wish will throw Grace a wish-granting party this afternoon to officially dedicate her new room.

The redesign isn’t the only thing that will be celebrated though.

On Monday, Grace was cleared to start walking again and once again left her wheelchair. Her doctors are beginning to throw around the word “remission” and she hopes to be there soon. She has lost 45 pounds of the prednisone-induced weight and she exudes confidence and joy as she tells of her struggles.

“I’m stronger now,” she said. “I feel like I can deal with anything.”

“One thing I like is we all pulled together, each in our own way,” her father said. “Emily, instead of being a teenager she became a caregiver. Josh and his friends, they were excited to help any way possible. I found out from one of the therapists at Wyoming Rehab that Josh goes with her and works the room. He does all the exercises with her and makes everyone laugh. It warms your heart to see a kid act like that. I’m glad we’re on the other end of the bad things but we have become stronger as a family.”

Grace provided advice to other children struggling in their own lives.

“Just keep going,” she said. “Don’t doubt yourself and don’t care what people think or say about you. Make friends with people that care about your actions and your words and nothing else.”

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