Natalia is seven years old, and in January 2021, she began experiencing pain. Everyday tasks were difficult. Natalia’s parents, Lindsay and Matt, reached out to her pediatrician, who ran some bloodwork, but recommended Natalia be tested for Celiac disease. While Natalia’s blood test showed positive for Celiac disease, they would’ve had to wait weeks for a GI specialist to diagnose it officially.
March came around, and Natalia was still having joint pain. They went back to the pediatrician, who ran more tests. While ruling out tick-related diseases, rheumatoid arthritis, muscular dystrophy, and other conditions, their doctor recommended they see a rheumatologist at the Children’s Hospital of Philadelphia. A light heliotrope rash had developed, and Natalia’s elbows were dry and reddened to the point of being raw. By this time, she could no longer lift up her body, and simple tasks like kneeling or getting dressed caused terrible pain. Not even her speech was exempt from adverse effects; her body was incredibly weak. The rheumatologist could tell right away what was occurring. “She said Natalia had so many textbook symptoms,” recalls Lindsay, Natalia’s mom.
The rheumatologist recommended they admit Natalia to the hospital immediately to confirm a diagnosis and rule out other illnesses. The rheumatologist gave them the official diagnosis on April 10—it was juvenile dermatomyositis. Lindsay and Matt were grateful to this physician, as difficult as it was to receive news of a disease they hadn’t even heard of.
“She’s phenomenal, and she’s been a God-send to our family.”
Natalia was immediately started on treatment: IV steroids while inpatient, oral steroids once discharged, methotrexate, hydroxychloroquine, and IVIG. Thankfully, her body responded to treatment very well. She has since stopped the methotrexate and steroids while continuing other medications and monthly IVIG. Her care team has been by her family’s side since the beginning. Being a rare disease, not many people understand JM or what Natalia was going through. But that didn’t stop those around her from rallying to support and understand Natalia’s experience. Her parents even made “Team Natalia” t-shirts to show their unrelenting support as she fought through treatment after treatment. She’s back to her active self, and they all rejoice in how far she’s come. Especially Lindsay and Matt.
“Seeing how quickly Natalia started to respond…that was a glimmer of hope,” says Lindsay.
Lindsay recalls a significant memory from that first weekend at the hospital. Natalia’s legs and feet would be in incredible pain every car ride. She’d cry every drive from the overwhelming feeling of pins and needles. This hospital is almost two hours away from their family’s house. That whole ride to their first appointment on a Thursday, Natalia was in tears. But that was no longer the case when she was discharged that following Tuesday.
“Completely different. No more tears.”
That was a spark of hope for Lindsay and Matt. It was a frightening time, especially as they learned more and more about Natalia’s condition, but that hopeful drive home assured her parents they were in the right place, doing the right things to take care of their daughter. Their rheumatologist was also a consistent source of hope along the way. She was a comfort to their family and calmed every fear that arose. As questions came up, she never hesitated to call Lindsay back to give answers. Lindsay was particularly concerned with Natalia’s body, coping with weaning off Prednisone, but her physician was there to encourage her.
“It’s exciting but scary, and her doctor was like, ‘I get it. I share that fear with you. But we have to trust that everything else is doing what it should be doing.'”
The combination of medical providers with relational, empathy-based care was key. Natalia was her rheumatologist’s first patient back from maternity leave this July. She greeted Natalia with joy and excitement, even asking about Natalia’s younger sister and showing care for Natalia as a person. That makes the whole ordeal less daunting for kids—when the physicians and nurses are people, too. It’s the light of the Children’s Hospital care team and staff that has accomplished that life-giving environment for Natalia. She even expresses a dream to one day serve as a nurse for other kids who receive infusions. But the hospital is not the only family Natalia and her family has found along the way. Cure JM has become a part of not just their story but also their conviction.
“I want to do anything and everything I can to help find better medicines, and hopefully, one day, a cure,” adds Lindsay.
When their family first registered with Cure JM, Lindsay connected with another family only 40 minutes away with a daughter Natalia’s age, also diagnosed. Their families met, and Natalia saw she was not alone in this fight, and there was someone else just like her. Beyond their region, Lindsay is also a member of Cure JM’s Facebook groups. She and Matt dove head first into participating in last year’s Giving Tuesday fundraiser. They posted JM’s information and Natalia’s story on Facebook and via word of mouth to her friends and family. Together, they raised donations for Cure JM’s important mission and are committed to supporting the organization in this year’s Giving Tuesday campaign in November.
“It’s a great resource for something so unknown, so it is very resourceful to be able to reach out to people who are going through what you’re going through and get different takes on everything,” Lindsay describes.
But she has a take of her own as well—advice she would share with those new to a JM diagnosis: faith over fear.
“Although this can be scary because little is known about this disease, you must have faith. You have to take things one day at a time and be sure to celebrate every victory as it comes. At one of our first follow-up appointments, I told our doctor how we continue celebrating these little victories as they come back to Natalia, and she pointed out that nothing about these victories is little. They are huge and should be celebrated.”
This past spring, on the first anniversary of Natalia’s juvenile dermatomyositis diagnosis, Lindsay wrote: “I always thought I would look to this day and hate it because it was the day that changed things forever. But I once saw someone post how they celebrate their child’s diagnosis because that is the day they finally got their child on the path to healing and being well; I couldn’t agree more. So I will continue celebrating April 10 because it’s when we finally got our answers and started getting Natalia on the path that has led us here.”
That’s a brilliant application of the optimism and hope Lindsay now encourages. It’s celebrating the unlikely victories—perhaps even the diagnosis—because as painful as it is, it’s the first step to recovery.
Knowledge sets you up for success: knowledge and support. Lindsay and Matt were by their daughter’s side the whole journey, along with the rest of their family, friends, and community.
“My daughter has this infectious giggle, and for the longest time, she wasn’t laughing, and she was just in so much pain. And she’s back to her silly self—dancing, running around, doing her cartwheels, everything,” Lindsay recalls.
“We missed our old Natalia and are ecstatic to have her back,” adds Matt. They are thankful every day, and they keep the faith that good is brought out of even the worst of times. Thankfully, their family is not alone. The whole Cure JM community is filled with parents, physicians, kids, and families much like theirs. Natalia’s giggle is the wonderful music of their home, and it only adds to the chorus of perseverance and hope that is hard at work in every pocket of the Cure JM family.
