Help save Lila from the debilitating pain of CRPS

Hi all, as most of you know, Lila Moorfoot (or ‘Lil’ as she is affectionately known) is a gorgeous, 11 year old girl whose life was crushed almost two years ago when she was diagnosed with the rare and debilitating neurological condition CRPS (Complex Regional Pain Syndrome) after a gymnastic injury that caused stress fractures in her foot.

Little did Lila’s family, our dear friends the Moorfoot’s, know at the time that this diagnosis would go on to change all of their lives in the most heartbreaking and traumatic way imaginable. In an instant the life of this kind-hearted, caring, sweet and fun-loving little girl, who is loved and adored by those nearest to her and anyone who has the pleasure of knowing her, was shattered beyond belief.

Lila went from being a bright, bubbly, active and athletic little gymnast, training 16 hours a week, partaking in the competitive sport she loved, to living in the most crippling, severe pain, 24hrs a day - unable to touch, move, stand or walk on her foot (and leg) without being in excruciating pain.

CRPS is a complex neurological condition that causes severe, persistent pain and is associated with central nervous system (CNS) sensitisation and autonomic nervous system (ANS) disfunction.

It is the most painful condition known to exist, with no cure. So excruciating is the pain that the ‘MacGill Pain Index’ (international pain rating scale) ranks CRPS pain higher than childbirth and amputation. CRPS is notoriously difficult to treat, but remission is possible.

Immediately following her diagnosis of CPRS, Lila underwent extensive rehabilitation, (both as an inpatient and outpatient) at the Royal Children’s Hospital together with the Victorian Paediatric Rehabilitation Service & Geelong Hospital.

Lila endured months sleeping at the foot of her parents bed, unable to wear a sock or clothing, or even put a sheet over her foot/leg on account of the agonising pain she was experiencing. At its worst, even the slightest movement, touch, water, wind or minute bump in the road would elicit the most unbearable pain, with her limb turning purple and becoming ice cold.

Tony, Stacey, Hunter and Tai witnessed their darling daughter and sister bedridden, suffering from immeasurable, constant pain.

In April of this year, after 17 months of intensive therapy, Lila had made some positive progress with her healing (she had reached the infant stages of weight bearing and taking a few steps walking on crutches). Devastatingly though, her condition deteriorated rapidly following the

discovery of new stress fractures in her foot.

The CRPS they thought she had overcome, returned worse than ever with the unbearable pain leaving Lila and her family in a state of disbelief and despair.

Desperate to see Lila recover, Tony and Stacey made the agonising decision to head over to the USA for intensive treatment at the Spero Clinic in Arkansas (a world-renowned leader in treatment for CRPS).

They left with the hope that this treatment program would help Lila fully recover and reach a state of remission ultimately allowing her to return home to Australia pain-free, having regained the ability to walk again. Their wish is to see Lila live a normal life as a happy and healthy little girl, with her glowing smile and beautiful spirit once again able to shine!

Over her many months of gruelling rehabilitation therapy, in the face of adversity, withstanding pain beyond comprehension, Lila has given it her all, remaining completely committed to her recovery. She has shown a determination, strength, courage, tenacity and perseverance well beyond her years, most recently by continuing with therapy, despite suffering from a seizure and passing out multiple times a day as a result of the intense pain she is in. The intolerable pins/needles, burning, squeezing, crushing and aching more than her young body can handle.

For Tony and Stacey it is utterly heartbreaking and soul-destroying watching their little girl endure such a horrific experience, feeling somewhat helpless, despite their best efforts to take her excruciating pain away.

Lila’s incredible, positive attitude and motivation to keep going, persevering and pushing through the pain is truly admirable and testament to her character as the inspiring, resilient and brave little girl she is.

Lila’s goal is to fully recover and reach remission. She is working towards regaining functional movement of her foot, with hopes of being able stand and eventually to walk unaided.

Beyond this she dreams of roller skating, hoverboarding, playing with her brothers and friends, going back to school, resuming acting classes, walking her beloved dog Coco and one day fulfilling her aspirations of returning to her first love, dancing and performing on stage!

The Moorfoot family have bravely and quietly endured this harrowing and traumatic experience doing whatever it takes to bring their sweet, little girl back. The treatment costs have been substantial and there is no set timeline to achieving remission.

They have never asked for any help and have continued to put on the bravest of faces all whilst having their entire world turned upside down and thrown into unfathomable turmoil.

Their sole focus has always been on Lila’s recovery from the horrendous, disabling condition of CRPS - one that has robbed her of nearly two years of her childhood. As Tony and Stacey once said, no person, let alone a child should ever have to endure the nightmare and torture that is CRPS.

The Moorfoots as a family have left no stone unturned, investing their everything into treatment for Lila with their unwavering commitment and sheer hope for her for healing. They have spent in excess of $200,000 so far with significant expenses to continue.

The Spero Clinic where Lila is currently undergoing rehabilitation, is at the forefront of treating neurological conditions including CRPS, with their dedicated team utilising innovative therapies, including physical therapy and neurostimulation techniques to help relieve pain and restore function for CRPS patients.

My hope is that this campaign will provide people with an opportunity to assist with some of the expensive costs associated with treatment, to show Lila and the whole Moorfoot family how much they mean to us.

This platform will also be a place to share updates and to hopefully celebrate the tiny wins along the way as Lila continues her treatment overseas. Then hopefully in the not too distant future, Lila will be able to return home to her family and friends, where she belongs, living the life she so dearly deserves!

Any contribution of support will be sincerely and gratefully received as a spark of light in the darkness for the Moorfoot’s, with all messages of love and support being forwarded on to Tony, Stacey, Hunter, Tai and Lila. All contributions will be used towards Lila’s ongoing rehabilitation treatment costs and expenses.

With deepest gratitude and appreciation,

Anthony Hewitt

Also, if you’re interested in learning more about CRPS and how it affects people, there is a Netflix documentary that has recently come out called ‘Take Care of Maya’ which illustrates one family’s life-shattering struggle with the debilitating condition.

‘Take care of Maya’