By Dawn De Busk

Staff Writer

NAPLES — When Robert Cash was 7-years-old, he went from being able to knock a baseball into the outfield during a Tee-ball game to barely being able to lift his neck up while lying on the floor.

Along with the atrophying of his muscles, Cash suffered from painful rashes on his body.

What caused this is a disease with a long name: juvenile dermatomyositis (JDM). The auto-immune disease weakens the muscles and affects the skin.

It took months before the family knew what was going on with Robert, before there was a clear and accurate diagnosis. At first, the family doctor thought it was eczema and sent them home with a bottle of cream, according to his mother Erica Avery.

The diagnosis of juvenile dermatomyositis happened right before his 8th birthday, she said. By the time, Cash was nine years old, he was patient at Boston Children’s Hospital with a medical team, she said. 

Very early on, the treatments went from a few times a week to almost daily, forcing Avery to quit her job managing homes for developmentally challenged adults.

“He was eight years old. Within six months, the therapy went from two to three times a week, to five to six times a week. During that time, he [regressed] from a child who played Tee-ball. He could hit the ball into the outfield. He was so strong in the skills that he was learning. After six months, he started to fall,” Avery said.

Robert’s therapy was no longer a proactive measure but a way of life.  

“Basically, we had to lift him onto the floor. His muscles had atrophied so much. He was like a three-month-old infant doing tummy time. We had to pick him up and put him on the floor,” she said.

He could no longer sit on a chair. He had to use special chairs at home and in the classroom. A belt was required to keep him upright and in the seat.

PERSEVERANCE

At a young age, Robert had the courage and the energy to insist that he continue to ride his same school bus.

“He learned to be quite an advocate for himself. It would have been easier if he rode a special-needs bus. As a child having all these things going on, he strongly believed in doing as much as he could in order for him to feel like he was still that same child he was before he got sick,” Avery said.

At that time, he attended Saco Elementary.

In addition to being put on steroids to counter the auto-immune deficiency, the doctors had Robert go through rounds of chemotherapy infusions.

Despite that, whenever the nurses asked how he was doing, he would say that he was wonderful and ask them how their day was going. His attitude was so positive.

“Every doctor, every nurse commented on how positive and kind and strong Robert was,” Avery said.

He had to endure the cruelty of classmates who did not understand his disease, who were afraid to sit next to him because of the skin liaisons, she said.

“He is amazing. He surpasses any expectations — he really does,” Avery said. “As much as he has a struggled, he is so strong.”

NEW LIFE AS NAPLES RESIDENTS

Two years ago, Cash and his family moved to the Town of Naples and Cash started Lake Region Middle School (LRMS) as a sixth grader. He is now in eighth grade.

During the fall of his seventh grade year, he played football — his first sport since Tee ball seven years ago.

At LRMS, he is a mentor who tutors and reads to younger students. He is involved in the school recycling program. Additionally, he maintains excellent grades.

“He misses half a day of school every two weeks for his infusion. Even when his disease is at its worst, as sick as he would be, he was always at the top of his class,” Avery said.

Last summer, Robert regained some of his muscle strength and applied that to much-needed yard work. Using a maul and an axe, he removed 25 tree stumps. His older brother Garreth helped.

Then, there was a substantial growing spurt, something that JDM often prohibits.

“About a year ago, his foot size was a size 6 same as it has been for three years. The disease can stunt a person’s growth. His shoe size went from a six to a size ten. He grew about four inches,” Avery said.

The regained muscle strength combined with the growth spurt were symbols of hope.

“As a parent, these things are a huge victory,” she said.

Robert has benefited from no longer taking steroids, which have so many side effects including being hard on the body’s vital organs, Avery said.

“The steroids, it took two years to go from 100 milligrams to zero. He is finally off the steroids. In the past nine months, it has been like night and day. His hands used to be like Vienna sausages. His face used to be swollen. Now, I can see his cheekbones,” she said. “The swelling has gone down. The calcium deposits

[under the skin]

were very few.”

Unfortunately, the remission that started in the spring of last year has reversed.

“It was called a remission by the doctors because Robert went from taking 25 major infusion medications to receiving four,” Avery said.

Now, Cash’s disease is no longer in remission.

FUNDRAISER PLANNED

CrossWalk Community Outreach has planned a fundraiser night to help with the medical expenses and other bills associated with treating Robert’s JDM.

The fundraiser will take place in the Naples Town Gym this Saturday, from 5 to 8 p.m. Ways of raising money are though a spaghetti dinner, a karaoke contest with an entry fee, and a Chinese auction of donated items.

Since moving to Naples, Avery has been volunteering for the Food Pantry, which CrossWalk holds twice a month. Additionally, Avery volunteers for a literacy program, teaching adults to read. 

She just found out two weeks ago that a fundraiser for her son was in the works.

“I didn’t ask for help. They thought of our family, which was quite humbling,” Avery said.

“People here are family. The power of prayer is what we get from them. It just gives you courage when you think you’ve lost it,” she said. “I feel really blessed. I don’t know how to take the news when Joanna [Moore] had told us they were going to do that for our family. I still don’t know how to take that. God leads us the direction in of people who are working for us.”

The financial piece of having a sick child seems secondary to the emotional toil it takes. But, that doesn’t stop the bills from adding up.

“It had always fallen back on us. We have Maine Care. Actually, it’s called Cub Care. We pay a monthly premium,” Avery said.

“Not everything is covered. Trips [to Boston Hospital] aren’t covered. Even with discounted parking, you are still paying $25. If you stay overnight, there is discounted housing, you are still paying,” she said.

“Some of Roberts’s medications aren’t covered at first, aren’t covered at all, or only a percentage of the medication is covered,” she said.

One bit of good news is that the Food and Drug Administration (FDA) recently approved an infusion medication for JDM. It was being used for adults, and could be promising for Robert.

FAITH TO FIND STRENGTH

Avery said that her mother instilled in her the lifestyle of helping others and volunteering her time. Also, her mom raised her to place an importance on having a faith.

During the times that life has been difficult, Avery has relied on a tight-knit family relationship and on her faith in God.

“We are all devoted to each other — we have to be. Where one family member goes, we are all there for support. No one ever carries that load alone,” she said.

Avery said she has five auto-immune diseases so she has had her health issues. Also, Robert’s older brother Garreth has had health issues that required surgery.

“What one of us goes through, we all go through. Seeing what the other person can do gives us strength,” she said.

“My mother had always taught me that God never puts anything in your life that you cannot handle,” she said.

In the case of Robert, he has turned his experience with a horrible disease into a way to educate others. He allowed doctors to use photos of his nail-beds for a medical symposium to learn about this rare disease.

“The biggest thing when Robert was chosen by the Make-A-Wish Foundation in 2015, it gave him a platform for children with terminal diagnoses went. He went to Disney and talked about his disease,” she said.

“Our worth — that isn’t the disease. The disease does not make you,” Avery said.

“We believe in God,” she said. “How could we be carried through these things without there being a Higher Being?”