Title: Australian Family Seeks Treatment for Daughter with Rare and Debilitating Illness
Date: July 10, 2023 | 5:31pm
Author: Eli Green, News.com.au
An Australian family has recently shared their heartbreaking journey after their daughter was diagnosed with a rare and debilitating illness. Bella Macey, a 10-year-old girl, developed complex regional pain syndrome (CRPS) during a family vacation to Fiji. What started as a simple blister turned into a living nightmare for Bella and her family.
Complex regional pain syndrome (CRPS) is a rare and incurable condition that causes chronic and extreme pain. Bella now experiences excruciating pain that shoots up her entire right leg. Describing her experience, Bella shared, “It’s all sharp, it’s burning, it’s tingly. It’s all sorts of different pain I never knew was possible.”
Previously a healthy and active girl, Bella’s life has been severely impacted by her condition. She can no longer participate in the activities she enjoys and struggles to walk or run without experiencing debilitating pain. Basic tasks like taking a shower or even putting sheets on her bed have become incredibly challenging for Bella. The pain is so intense that even the slightest touch causes her to scream in agony.
Bella’s parents are also deeply affected by their daughter’s condition. They long to comfort her with a simple hug, but any movement or contact causes her immense pain. Emma Macey, Bella’s mother, expressed her anguish, stating, “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.”
Desperate for answers and treatment, Bella’s family has turned to doctors in the United States. They have traveled overseas to seek help from the Spero Clinic, as they were unable to find suitable options in Australia. However, the financial burden of the treatment is a significant concern for the family. Emma Macey shared, “We’ll sell our house if that’s what we need to do, there’s nothing we won’t do to make sure that she gets better.”
To alleviate the financial strain, Bella’s mother has launched a GoFundMe campaign to raise funds for her daughter’s treatment. Generous Australians have already contributed approximately $127,000 towards the $157,000 goal. The campaign serves as a reminder of the compassion and support of the community during difficult times.
The Macey family’s story sheds light on the challenges faced by families dealing with rare and debilitating illnesses. It highlights the emotional and financial burdens that accompany seeking treatment, especially when options are limited. As Bella Macey continues her battle against CRPS, her family remains hopeful for her recovery and grateful for the support they have received.