10-Year-Old with Rare Neurological Condition Details Debilitating Pain That Causes Her to Scream When Touched

“It’s all sorts of different pain I never knew was possible,” said Bella Macey, 10, who was diagnosed with a rare and painful condition called complex regional pain syndrome

An Australian family is opening up about their daughter’s debilitating neurological condition.

Bella Macey, 10, was on a family trip in Fiji when she developed an infection from a blister that caused her foot to become inflamed. She was quickly hospitalized and diagnosed with a rare and painful condition called complex regional pain syndrome.

“It’s all sharp, it’s burning, it’s tingly. It’s all sorts of different pain I never knew was possible,” Bella said in an interview with A Current Affair “I can’t have a shower, I can’t have a bath, I can’t put any sheets or anything on [my leg] … even with a tissue, you can’t touch it with anything, otherwise I will scream.”

“I just want to give her a big cuddle but I can’t because if I cuddle her, then it moves her and that hurts her,” her mother Emma Macey told the outlet.

“It’s heartbreaking,” her father Chris Macey added. “You have a love for your child that you can never explain but her going through this is traumatic.”

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Complex regional pain syndrome (CRPS) is a rare neurological condition that can cause constant or intermittent pain in the extremities, a burning sensation and extreme sensitivity to touch, according to the Cleveland Clinic. The condition can make even routine procedures, like taking a blood pressure reading, excruciating.

“Bella's pain has meant she has lost mobility in her right foot and leg, right up to her groin,” the family said on their GoFundMe page. “She is now bedridden or in a wheelchair if she needs to get around.”

“It has brought Bella's life to a standstill, leaving her unable to move, tolerate any touch or sensation to her affected leg and foot, attend school, play with friends, or even wear pants because the touch of the material is too much to bear,” they explained.

Bella was hospitalized for four weeks as her parents hoped to send her overseas for treatment as there are no clinics in Australia.

After difficulty getting admitted, Emma traveled alone to Fayetteville, Arkansas with her daughter last week to begin treatment at the Spero Clinic, which specializes in CRPS. Bella will undergo 13 weeks of treatment at the clinic, which her mother said will be extended if needed.

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“We are hoping with her early diagnosis this isn't the case and there will be updates posted soon of her tolerating touch, standing on her foot, and then walking,” Emma said.

In an update on Monday posted to the GoFundMe page — which has garnered over $215,000 to support Bella’s specialized treatment — the family shared their gratitude for the support Bella has received.

“We are so grateful and overwhelmed by all of the incredible support to help Bella get the treatments she needs here at Spero. Bella is realizing it’s hard work but she is determined and knows she has a whole army of people behind her cheering her on,” the family said. “Thank you so much everyone ❤️❤️”

“I’m so afraid and terrified of pain and everything I’m gonna have to go through,” Bella, in tears, told A Current Affair about her treatment plan. “But I know in the end, it’s all gonna be amazing.”

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