This family story was originally shared with Cure JM and remains part of our community’s collection of Stories of Hope. Each JM journey is unique, and families’ experiences may change over time.
Rachel was a regular seven year old. She loved activity. She was filled with vitality. But right before she turned eight, she began suffering from intense pain and muscle weakness. There was no pediatric rheumatologist in the city where her family lived. Her case of juvenile dermatomyositis was so severe, however, that when she was transferred to the Children’s Hospital in Phoenix, things didn’t get better.
At the time she could still swallow, so doctors insisted on giving her oral steroids as opposed to placing a port. Not long after, her condition worsened. She was admitted to the ICU. Each day was more grim than the last. Rachel’s case was one of the rare ones you don’t often hear about—the ones more severe than anyone could imagine. For three weeks she was comatose and breathing through a tube. Her kidneys failed. She was on 24hr dialysis and receiving blood transfusions. Little can be said to do justice to the pain of this family’s period of struggle.
“I want to forget most of these details,” admits Rachel’s mom, Cheryl. “It is heartbreaking, but it is life-changing.”
During that time, their family found a home in the Cure JM Facebook page. Through meeting amazing Cure JM people they were introduced to a new doctor. This doctor saved Rachel’s life. For a month, Rachel was in inpatient rehabilitation to relearn all the abilities she had lost. Now, Rachel is 11 years old. She began going to school in person this spring. Every week she grows stronger in her physical therapy appointments. She still uses a stroller or wheelchair when their family is out shopping or traveling, and she spends two days a month receiving IVIG and solumedrol infusions. Slowly but surely, she’s getting her body back. As painful as it was, Cheryl never lost hope. Even in the toughest times, the strong, sustaining light of her own mother’s faith reminded her to always keep going.
“Great news is, her labs have been in the normal range for the past five months. She continues to inspire us with her resilience.”
Their family has given back to Cure JM. They donate because they want to help other families. But they also support the community relationally. Another family states away also had a daughter with a severe case. When the daughter was admitted to the ICU, a Cure JM leader connected Cheryl with the girl’s father. Cheryl and her family shared their experience and encouragement with the father over the phone. They took the hope they were shown when their own Rachel was in the ICU and passed it along to this family. Today that girl plays ice hockey. She and her family have lived their own story of hope.
“Every JDM story is different,” Cheryl recognizes. Their daughter’s case was particularly severe, and she admits that it was easy to be jealous of others’ stories. But they want every child with JM to rebuild their strength and gain their life back, regardless of the details of the story.
“Our Rachel will get there soon. Never lose hope. We keep praying, and we are always thankful for all of our blessings.”
Cheryl encourages other families to see the good and keep believing there’s light at the end of the tunnel. Her practical advice for new families is related to Rachel’s treatment. She suspects that if her daughter had been on high dose interval treatments of pulse solumedrol from the beginning, then she might’ve kept some strength in her muscles. When they first arrived at the Children’s Hospital years ago, Rachel was still able to walk. But the little strength she had quickly deteriorated.
“For newly diagnosed families, this is what they are going to have to seriously think about—preserving what little strength these children have left and getting them stronger.”
The last four years have been difficult, but Rachel’s family is hopeful about what’s in store over the next four years. Their gratefulness and faith has revealed the good things along the way. With every day her body is strengthening. Her spirit of perseverance only grows. Rachel’s life remains filled with possibility. Possibility and hope.
