Help Allie Fight CRPS

My cousin, Allie, has been battling Complex Regional Pain Syndrome (CRPS), a rare crippling condition which causes relentless, excruciating pain. She was diagnosed with CRPS in 2019 at the age of 10. The condition is said to be more painful than childbirth, and it’s tortured sweet Allie these past few years. CRPS has been called “the suicide disease” because so many people have given up hope.

 

When she has a flare up, raindrops, the breeze from a ceiling fan, or a friendship bracelet touching her skin could trigger excruciating pain. While having an acute flare up, she describes it as having a blow torch burning her legs, being stabbed repeatedly, and her bones being crushed, all at the same time. It’s absolutely heartbreaking. Though she has had some remission, unfortunately she has been back in a wheelchair since November 8, 2021 due to this debilitating disease.

 

From Allie’s mom, Katie:

“The acute flares have been back to back. She had to go to the emergency room four times in November 2021. The ER doctors gave her doses of morphine, ketamine, vicodin, and other medication to try to get her some relief from the pain. She was admitted to Marshfield Children’s Hospital at the end of November to continue care (pain control), but they released her when her pain was tolerable. She was back in the ER two days later with an acute CRPS flare.”

 

Due to her recent visit at Marshfield Children’s Hospital and after much review by her medical team, she has been qualified for a newer intenstive treatment program with Children’s of Wisconsin in Milwaukee. She will start this program on Monday, December 13th. The outpatient treatments will last 4-6 weeks. Some of the treatments are not covered by insurance. Katie and Allie will be staying at a nearby hotel, since Milwaukee is approximately four hours from their home.

 

Although there is no cure, improvement and even remission are possible with treatment, but treatments for pediatric CRPS are hard to come by. With that being said, Allie’s parents have heard good things about this newer pediatric treatment program.

 

From Katie:

“Allie just wants to be a normal kid without debilitating pain. It’s heartbreaking seeing how much this disease has affected her physically, mentally, and spiritually.

 

She’s such an animal lover, and our two dogs, Kona and Willow, bring her so much joy in good times and bad. She loves volleyball, dancing, and gymnastics, but her doctors advise against those activities due to her CRPS. She dreams of working in the medical field someday and helping others.

 

While dealing with this, Allie’s strength and courage has been inspirational. She is a light in our lives, and her kindness and positive spirit are seen by all who get to know her. We have faith that these additional treatments will bring her some relief.

 

Your prayers, love, and support mean so much to us! Please share her story to help her fight this disease! Thank you, in advance, for your kindness!”