Lila Moorfoot, 11, battles debilitating neurological condition

Highton’s Lila Moorfoot dreamt of becoming a gymnast but a debilitating neurological condition means she passes out up to 30 times a day from pain.

Lila Moorfoot was diagnosed with complex regional pain syndrome (CRPS), a rare neurological condition.

Highton’s Lila Moorfoot dreamt of becoming a gymnast, but a debilitating neurological condition means she passes out up to 30 times a day from excruciating pain.

In 2021, Lila sustained a stress fractures on her second and third metatarsal base and her cuboid bone in her right foot following a gymnastics injury.

Her mum, Stacey Moorfoot, said Lila, now 11, was in a moon boot and cast for several weeks.

“The cast came off … from the minute her foot hit the ground, she had excruciating pain shooting up her leg and she collapsed on the floor,” Mrs Moorfoot said.

Lila was diagnosed with complex regional pain syndrome (CRPS), a rare neurological condition.

“At that point in time we didn’t know when CRPS was … that was when her life changed,” Ms Moorfoot said.

Lila experiences burning, crushing and squeezing pain daily in her right foot.

At the end of May, Lila and her family travelled to Arkansas in the US to the Spero Clinic, a world-leader in CRPS treatment.

Her therapy includes a variety of appointments, ranging from vagus nerve stimulation to neuromuscular rehabilitation and cold laser therapy.

Lila receiving treatment in the US.

When Lila arrived in the US she was also suffering from severe alloydinia, which is defined as pain resulting from a stimulus, such as a light touch of the skin, that would not normally provoke pain.

This meant she could not move or touch her leg, or wear any socks, without being in excruciating pain.

After 10 weeks of treatment, the alloydinia stopped which was a “huge breakthrough”.

“It was the most incredible moment … it’s hard to put into words how excited we were,” Mrs Moorfoot said.

Lila is now working towards gaining movements in her foot.

“Her foot is frozen is a ballerina position, it is still turning shades of purple and blue and is ice cold to touch,” Mrs Moorfoot said.

Lila’s right foot turns shades of blue and is cold to the touch due to the condition.

But Lila’s pain is so severe, she is passing out.

“(The pain is) too much for her body to tolerate and manage,” Mrs Moorfoot said.

“Her body’s way of coping with it is by shutting down to try and protect her from the intolerable pain.

“She passed between 20 to 30 times today.”

The family are also looking to head to Tennessee in a few weeks for medical hypnotherapy to help with Lila’s fainting.

“We are doing everything we can to help her progress with the end hope she will reach remission,” Mrs Moorfoot said.

Moorfoot family; Tai, Tony, Lila, Stacey, and Hunter.

Before being diagnosed with CRPS, Lila “lived and breathed” gymnastics.

“CRPS crushed her dreams of being a gymnast, it’s taken a lot of work to process the grief that came with losing that,” Mrs Moorfoot said.

But Lila remains hopeful that she will enter remission and be pain free, with aspirations to dance and perform on stage.

“She would love to be in a movie one day but right now it’s baby steps,” Mrs Moorfoot said.

“There is still a long road ahead of her.”

To help support Lila’s rehabilitation, head to gofundme.com/help-save-lila-from-debilitating-crps.

Originally published as Lila Moorfoot, 11, battles debilitating neurological condition