This Thanksgiving will have special meaning for Heather and Derek McCarty of Arnold, who had been struggling to cover the cost of a medical treatment for their 10-year-old daughter, Lyla, who has a rare condition that causes her constant pain.
But, then Charlie Rocket and the Dream Machine stepped in to help raise funds for the family, and as of Nov. 19, more than $550,000 had been raised.
Lyla has been diagnosed with complex regional pain syndrome (CRPS), a debilitating, incurable neurological condition that causes constant mid-level pain punctuated by excruciating pain flare-ups.
Doctors have prescribed a three-week, inpatient program called Functional Independence Restoration Program (FIRST) to help Lyla learn to manage her pain, but the family’s insurance company has declined to cover the $67,000 cost.
“She begs me every morning, ‘Please take me to the hospital. They have to be able to do something for me,’” Heather said. “It’s hard to hang on when nothing is changing and you’re still in pain.”
Since Lyla’s diagnosis, her parents have been fighting the insurance company decision, while friends and community members have held fundraising events and started a GoFundMe page to raise the money for Lyla’s treatment. But it was slow going; as of early October, the McCartys were only about halfway to their goal.
That changed when Charles “Charlie Rocket” Jabaley, an Emmy- and Grammy-winning hip-hop mogul who retired in 2017, took on the cause.
Jabaley now pilots his Dream Machine bus across the country, helping make dreams come true in local communities, and a representative from Rocket recently contacted the McCartys offering to help make Lyla’s dream of a pain-free life come true.
“They came right when I was at my lowest point,” Heather said. “It’s been tough on all of us.”
The group swung into action, alerting its millions of social media followers about Lyla and about CRPS. Dream Machine staffers arranged a pop-up bakery for Lyla, which drew thousands of customers and brought in more than $20,000; over the next 48 hours the website version of the bakery brought in more than $400,000. Donors poured onto the GoFundMe site once the group splashed Lyla’s story across all its social media accounts, bringing the total money raised by the GoFundMe page to just under $150,000.
Needless to say, Lyla will get her treatment as soon as it can be scheduled.
Suddenly miserable
Lyla was a typical kid until February.
“She loves animals and wants to be a vet,” Heather said. “She also loves baking. She was just a generally healthy, regular kid.”
But then one Sunday she and her 12-year-old sister, Addie, were in the kitchen baking a cake, when Lyla suddenly screamed in pain.
“Right away it was clear there was something seriously wrong with her,” Heather said. “She could only scream and cry ‘My leg! My leg!’ She didn’t want us to touch it; she couldn’t walk on it.”
Over the next few weeks, Heather, 43, and dad Derek, 45, watched in dismay as their daughter was evaluated and prodded – and remained miserable. She couldn’t stand her left leg to be touched and had to use a walker because she couldn’t put weight on it. Her foot became purplish and grew cold to the touch.
Lyla was treated at St. Louis Children’s Hospital by Dr. Kayla Daniel, a Washington University pediatric orthopedic specialist.
“CRPS is, thankfully, not very common,” she said. “It’s not something I typically see; I specialize in sports medicine. She was referred to me because it involved an extremity. The family had no answers, and she was getting worse.
“That’s what we see with this disease – patients struggle with getting a diagnosis, and it’s not a slam dunk. You have to piece the puzzle together. I did a nerve conduction study, did back X-rays, to rule out other things. Unfortunately, it’s diagnosis by elimination.”
The best doctors could do was help the family begin learning to cope with her condition.
“Every motion of her body, like flexing or extending her joints, was painful,” Daniel said. “It’s so hard to watch. Patients have this indescribable pain, and they can’t do activities they previously enjoyed. And it’s made worse because you can’t see anything; there’s no bruise, no ligament tear, no fracture. It’s like the nervous system is on overdrive, constantly firing.”
Heather said her daughter’s pain is constant.
“Most often, she’s at about a 7 out of 10 (on the pain scale),” she said. “But there are times when she’s at a 9 or even 10. She hasn’t had a moment where she was pain-free since this started.”
Lyla’s condition affects her whole body.
“Because she doesn’t use her left leg, she is losing muscle mass in her left side,” Heather said. “That will eventually affect her back, hips, knees.”
Heather said the family also is worried about Lyla’s mental state because of all her pain.
“They call CRPS the suicide disease, because many people afflicted with it just can’t tolerate it,” Heather said. “In August, Lyla admitted to the pain psychologist that she had those thoughts. It just broke my heart.”
Giving Lyla control
Once Lyla was diagnosed, she started desensitization therapy at Children’s Hospital. She was able to stop using a walker, but made no further progress.
Daniel said treatment for CRPS isn’t clear-cut.
“There are multidisciplinary techniques to help patients cope and manage, but as far as a cure, there’s nothing we have yet,” she said. “I treat a lot of musculoskeletal conditions, but CRPS isn’t something that you can say, ‘Oh, six weeks in a brace and you’ll be fine.’ You feel helpless.”
Staff at the Pain Management Clinic suggested something more intensive, and the McCartys were referred to the FIRST program at Cincinnati Children’s Hospital. They traveled there in August for Lyla’s evaluation.
“She saw a therapist, a pain management specialist, a pain psychologist – and they all said she was the perfect candidate,” Heather said.
The three-week program features intense desensitization training and teaches a variety of coping strategies. Lyla and her mother will attend together.
“It’s important to have a caregiver who is knowledgeable and can help her cope once she gets back home,” Daniel said.
The program won’t be easy for Lyla.
“It’s going to be rough. It’s painful. It will require her to do things that make her hurt the worst,” Heather said. “When she was in desensitization, it was an hour a day, a couple of days a week. This is all day, every day.”
But Heather said ultimately it will be worth it.
“The goal for our family is to get Lyla to a more stabilized place. The reason this program is so successful is it puts the child in the driver’s seat. It empowers them to take control of their condition so they’re not at the mercy of it, not constantly waiting for the next flare up.
“They walked through with us what they would do, what it would look like, what they hoped to accomplish. It was the first time in a long time she had any hope.”
Too good to be true?
When the Dream Team contacted her, Heather was initially suspicious
“It sounded way too good to be true,” she said. “But, once we met them, we realized these people were for real.”
With her parents’ blessing, Lyla was introduced to Charlie Rocket on Oct. 30 and learned about the group’s plans for a pop-up bakery fundraising event.
“Their whole team came and baked with her, having fun, getting to know her,” Heather said. “We had to agree they could film it. All the while they’re shooting, they were getting to know us, answering every question we had.
“I haven’t seen her that happy in a long time.”
Lyla, who loves pigs, designed a pink pig cookie, and the Dream Team took care of production. On Nov. 7, the pop-up bakery event was held at Made by Lia, a bakery in Florissant. More than 5,000 people showed up, and the cookies were gone in just a few hours.
Cookies are still for sale at
Heather said that any funds beyond what is used for Lyla will go to help others with CRPS.
“She (Lyla) will need additional treatments, we know that,” Heather said. “She wants to help others, but we just don’t know what shape that will take.”
Daniel said Lyla’s internet fame could go a long way toward helping others.
“Hopefully it will bring more attention to this disease, to the public, to insurance companies, raising awareness.”
The McCartys are working on getting an admission date for Lyla into the FIRST program as soon as possible.
“Being there and missing the holidays will be hard,” Heather said. “But I’ll tell you this: Charlie and his team are the closest thing to angels on earth I’ve ever run across.
“We feel humbled and blessed. It really is a miracle.”