During their family trip to Washington D.C. last November, Rebekah “Bekah” Smith noticed her youngest child, Kennedy, had developed a rash on her face. ‘Interesting,’ Bekah thought, but the seasoned mother-of-five wasn’t initially worried. She simply stopped by a pharmacy, picked up some eczema cream, and the Smiths continued on with their vacation.

However, the rash wasn’t going away – instead, Bekah noticed it was progressively worsening. They tried changing their soaps and laundry detergent, and monitoring what Kennedy was eating and interacting with – all to no avail. That’s when they called the doctor to schedule an appointment.

“Since it was November, we were hitting the holiday season, so it took a while to get in to see anyone,” Bekah begins. “We kept getting sent from specialist to specialist. At first, they also thought it was eczema. So, we began a month of appointments and antibiotics to treat that. It got better – until one day, it got bad again.”

At that point, the family was sent to another specialist – this time, a pediatric dermatologist. It was during their first appointment on February 7, 2023, that they heard the term “JDM” for the first time. JDM, officially known as Juvenile Dermatomyositis, is an autoimmune disease in children that attacks the muscles and joints in the body. The disease is so rare, affecting approximately three out of 1 million kids, that the dermatologist had only ever seen the diagnosis in a textbook. Bekah was told Kennedy should get started on Methotrexate, a drug commonly used to treat cancer, right away. The Methotrexate would work as an immune suppressant, which would help reduce the symptoms Kennedy was experiencing.

The next few days were a blur – Bekah, exhausted and overwhelmed, remembers repeatedly calling rheumatologists in the area.

“I finally get on the phone with the rheumatology department at Scottish Rite,” Bekah explains. “I was literally crying, and I told her ‘My little girl just went to the dermatologist on Tuesday, they think she has JDM. Can you please help me?”

Thirty minutes later, the family had an appointment scheduled for the following morning at Scottish Rite. So on Friday, February 10, they packed up their things, left their home in Palestine, and headed to Dallas in search of answers.

When they arrived, the Scottish Rite medical team agreed with the dermatologist’s belief that Kennedy was suffering from JDM, but they would need to test to be sure. So later that month, Kennedy returned to the hospital to undergo a muscle biopsy surgery – where the diagnosis was officially confirmed.

“Starting the last week in February, we started going every other week, and she would get three days of treatment at the outpatient clinic of Scottish Rite,” Bekah explains. “We would go there in the mornings, she would receive high-dose steroids for a few hours, and then we would come back to the Ronald McDonald House [of Dallas] in the afternoons.”

Towards the end of April, the Smiths were hopeful about Kennedy’s condition. Her strength was improving, and her skin was beginning to clear up. However, their optimism soon turned to shock when they were told Kennedy’s labs weren’t where they should be, and she would need to begin stronger medications. The family began a variety of new treatments, including CellCept® and Intravenous immunoglobulin (IVIG). IVIG requires a two-day hospitalization, meaning they would need to stay at the hospital for longer periods of time during the day.

“In the beginning it was all a blur. At one point, it felt like we would come home, drop our stuff off, and then get ready to go back – it was a revolving door of trips. But everyone was stepping up to help us – our parents and family, our friends, and our community. Then the idea came to me… I just knew we were supposed to do a fundraiser to give back.”

So in the midst of an already busy and hectic time – filled with various appointments, 2-hour trips back and forth, and countless medical treatments – Bekah and her family planned a lemonade stand in Kennedy’s honor. However, the proceeds would not go back to the Smith family to help with Kennedy’s medical bills. Instead, the family wanted to support the two organizations that had helped her family during their time of need.

“I thought my goal was so big at the time,” Bekah laughs. “I wanted to raise $1,000 and give $500 to Scottish Rite and $500 to Ronald McDonald House of Dallas. So the month leading up to the lemonade stand, we really tried to advertise it. We passed out flyers at schools, restaurants, everywhere. It was so fun – we had 25 of our closest family and friends there to help us operate the stand that day. The fire department showed up and even our friends from out of town showed up.”

More people showed up too, making the May 6th, “Kennedy’s Cause” lemonade stand an even bigger success than Bekah could have imagined. The Smith’s community, home church, and people from Kennedy’s daycare came out in full force and were critical in helping the Smith’s surpass their goal. In total, they raised $9,100, of which half was donated to RMHD.

“One of our biggest things, and this is true at Scottish Rite and RMHD, is that Kennedy gets to see the same people,” Bekah says. “We get to see the same faces when we come, and we get to develop relationships with people. That’s really big for Kennedy and it’s been really big for us. It makes the journey a little better for us.”

This past year, the Smiths and their community have been steadily finding ways to give back, participating in programs that benefit RMHD. The Smith’s laughed when explaining their home also serves as a part-time, soda-tab collection site.

“We are from a small town, so we will be out at the baseball field, and someone will give us a gallon bag of pop tabs,” Bekah says. “We literally have them on the floor right now. We never know where they are – they are in the laundry room, everywhere really.”

In July, on one of their trips to Dallas for Kennedy’s treatment, they delivered close to 1 million pop tabs to the House. More recently, the Cayuga school district’s volleyball team embarked on a long field trip to the House, alongside the Smiths, where they cooked dinner for our families.

Kennedy’s condition has tremendously improved since that frightful day in February when she received her diagnosis, and even more so since they received the recommendation to increase her medication in April. The Smiths still travel monthly to Dallas for her IVIG treatments and check-ups, but the rest of their medications can be administered at home. Kennedy’s JDM is triggered by viral infections and sunlight, so the Smiths are continuing to diligently protect her from potential flare-ups, while trying to keep her life as normal as possible.

“She’s been able to get lower dosages of some of her medicine. The goal is to maintain on CellCept® and Methotrexate. Then they will try to start weaning us off those too, but that’s a few years down the road. We don’t try and think too much about the future, we just look at it as ‘What does tomorrow hold?’,” Bekah begins, “This journey has definitely been challenging for our family. However, with the support of our community, the relationships we’ve built with other families and workers at RMHD, and the guidance from our medical team at Scottish Rite has given us the strength to face each day ahead of us.”