The family of a young aspiring gymnast who suffers from the world’s most painful and incurable disease has spent more than $200,000 trying to help her recovery.
Lila Moorfoot, 11, dreamed of becoming a gymnast when she suffered a series of stress fractures in her foot two years ago.
The already painful injury brought out an even worse condition, Complex Regional Pain Syndrome (CRPS).
CRPS is a neurological disease nicknamed the “suicide disease” because it causes horrible chronic pain, rated worse than unmedicated childbirth on the McGill Pain Index.
Close friend of the Moorfoot family, Anthony Hewitt, described the devastating effect CRPS had on young Lila’s life. GoFundMe job.
Lila Moorfoot (above) was diagnosed with the most painful condition known, complex regional pain syndrome, two years ago.
Lila (above) spent 17 months in outpatient and inpatient care in Geelong and Melbourne
A family friend said Lila (above) was “unable to touch, move, stand or walk on her foot without feeling excruciating pain.”
“Lila went from being a bright, bubbly, active, athletic little gymnast to living in the most crippling, intense pain, 24 hours a day – unable to touch, move, stand or walk on her foot without feeling excruciating pain,” he said. said.
“She endured months of sleeping at the foot of her parents’ bed, unable to wear a sock or clothes, or even put a sheet over her foot and leg due to the excruciating pain she felt.
“In the worst case scenario, even the slightest movement, contact, water, wind or small bump in the road would cause the most unbearable pain, with his (leg) turning purple and freezing.”
As soon as she was diagnosed with CRPS, Lila began her rehabilitation from her home in Geelong and at the Royal Children’s Hospital in Melbourne.
Although there is no cure for CRPS, patients can go into remission and continue their lives pain-free.
After 17 grueling months of inpatient and outpatient care, it seemed like Lila was finally making progress.
CRPS patients, like Lila (above), suffer from horrible chronic pain but can go into remission and live pain-free.
Lila (above) has been working toward getting into remission since May at a world-first clinic in Arkansas.
Lila (above) appeared to be doing better before more stress fractures were discovered in her foot in April this year.
“Lila has made positive progress in her recovery, she has reached the infant stage of weight-bearing and walking a few steps on crutches,” Mr Hewitt said.
“But unfortunately his condition deteriorated rapidly following the discovery of further stress fractures in his foot.”
The heartbreaking twist was the final push Lila’s parents Tony and Stacey needed to move to America for better treatment in May this year.
They headed to the Spero Clinic in Arkansas – the only facility in the world trying to treat the cause of CRPS with non-invasive therapy rather than focusing on pain management.
The clinic’s approach has been very successful, as a high number of patients have gone into remission.
“They left with the hope that this treatment program would help Lila make a full recovery and achieve a state of remission, ultimately allowing her to return home to Australia pain-free,” Mr Hewitt said.
“Their wish is to see Lila live a normal life as a happy, healthy little girl, with her bright smile and beautiful spirit able to shine again!”
Lila (above) hopes she will go into remission from CRPS and live a normal life.
The 11-year-old created a vision board (above) of all the things she hopes to do once she recovers.
Lila (pictured with her mother, Stacey) passes out around 30 times a day because her body can’t handle the pain caused by CRPS.
Lila spent her time at the clinic working hard to recover, but things got even worse. She fainted about 30 times a day from the pain and suffered a seizure.
“The intolerable tingling, burning, squeezing, crushing and pain is more than her young body can handle,” Mr Hewitt said.
“For Tony and Stacey, it is completely heartbreaking and destructive to see their little girl endure such a horrible experience, feeling helpless despite their best efforts to ease her excruciating pain.”
Still, the 11-year-old remains hopeful and has created a vision board filled with things she hopes to do once she goes into remission.
“Lila’s incredible, positive attitude and motivation to keep going, to persevere and to push through pain is truly admirable and a testament to the brave little girl she is,” Mr Hewitt said.
“She is working to regain functional movement in her foot in hopes of being able to stand and eventually walk without assistance.”
“Beyond that, she dreams of rollerblading, hoverboarding, playing with her brothers and friends, going back to school, taking theater classes again, walking her dog Coco and perform on stage.”
Unfortunately, the cost of Lila’s treatment begins to hit the Moorfoot family, who have already spent over $200,000 in hopes of relieving Lila’s pain.
A GoFundMe to raise money for Lila’s treatments (above) raised $10,950 from 104 donors.
Her parents hope to use the funds to continue Lila’s treatment (above) at the American clinic
Mr Hewitt hopes that GoFundMewhich has already raised $10,950 from 104 donors, will help the family cover “some of the high costs.”
“Their sole goal has always been to cure Lila of the horrible and debilitating condition of CRPS – a condition that stole almost two years of her childhood,” he said.
“As Tony and Stacey once said, no one, least of all a child, should ever have to endure the nightmare and torture that is CRPS.
“The Moorfoots, as a family, left no stone unturned, investing everything in Lila’s treatment with their unwavering commitment and pure hope for recovery.”
