Please help 15 year-old Liam get his life back

Liam is 15 and has a Post-viral Complex Pain Syndrome. He lives in a state of constant, agonising pain. He is suffering. Please help us fund intensive overseas treatment for Liam.

It's hard to remember Liam’s life before illness. Liam was academic, social, friendly, independent, caring and busy. He loved school, joking with friends, music, playing cricket and tennis, and his life. He was similar to most boys his age, looking forward to his future.

Liam was diagnosed with Post-viral Complex Chronic Pain and Postural Orthostatic Tachycardia Syndrome (POTS). We were told that covid and the subsequent spate of viruses dysregulated Liam’s immune system, causing neurological damage to his central nervous system and functional impairment. The Complex Pain Syndrome that Liam is living with is known as the “Suicide Disease” because the severity of pain surpasses that of cancer, amputation and childbearing on the McGill Pain Index. My son feels like he is literally dying of pain.

I have watched Liam suffer with excruciating whole body pain 24/7, with no relief, for over a year now. It’s hard to grasp what that really means and what that really looks like. Liam describes constant burning from the inside out; feeling like his cells are being ripped apart, like he is being shot in the back of his head, that his body is being electrocuted and his bones are being crushed. Liam is in constant agony every minute of every day.

Liam’s Story

Hello, I am Liam’s mum, Maree. The last time my son was healthy and well was in March 2022 before he went on his school Cadets camp. Our story started eighteen months ago and crept up on us. First Liam tested positive for covid, then his immune system weakened over the next six months, and just before his 14th birthday he said “something’s wrong mum, I am burning”.

We didn’t know it then, but that was the start of Liam’s full-body, severe and constant neuropathic pain. It was just like a light switch had been turned on. Liam’s health declined rapidly. What followed was numerous GP appointments, four trips to emergency, and three admissions to Westmead Children’s Hospital, the first on Christmas Eve 2022 and two by ambulance. Tests, followed by more tests, more assessments and consultations with numerous medical teams. I have become Liam's full-time carer.

By January 2023 Liam was unable to move himself out of bed independently or walk to the bathroom from his hospital bed, and his muscles were constantly spasming. He couldn’t sleep, he lost 10kgs, found eating and drinking painful, and was in a constant state of full-body neuropathic pain. Liam was essentially paralysed and could no longer walk.

With Liam spending over two months in hospital, I was told to take him home and it was suggested that we try to go back to school and have a daily routine. No medications had helped. I took Liam back to school for short periods in March 2023, in a wheelchair and in constant pain, but within a short period of time his head would hit the desk when his nerves and muscles could no longer hold his head up. This was horrendously traumatic to watch. But Liam insisted that he keep going to school, he wanted to be with his community, and with his beautiful friends. We are so grateful for being welcomed back by Liam’s school community, St Aloysius’ College, even though seeing Liam like this was hard for everyone. We thank you all for keeping Liam in your prayers.

Liam has shown amazing grace and resilience in the face of adversity and disability. He still smiles, is polite, attends school and loves laughing with his friends, but he does this through constant excruciating pain. We desperately want Liam’s life back. Liam’s neurological fatigue, sleep deprivation and pain means that he can’t engage fully in school life or schoolwork. He is unable to concentrate. He has lost his independence. His pain and suffering is never-ending and immense. This poor quality of life and strain on his mental health and wellbeing has led Liam to increasingly find a hopeful and positive future out of reach. He says that he has been given a “life sentence”.

Why we need your help urgently, so that together, we can give Liam a brighter future

Liam’s small gains have been hard won. Painful physiotherapy has helped Liam achieve some improvements in his mobility. Unfortunately, Liam’s neuropathic pain has shown no improvement; it is a constant, unchanging battle, with no end in sight. Liam’s treating teams say he has been “amazing” in adhering to a tough treatment regime, but that they have nothing more to offer. With your help, we now have hope for Liam.

Your generous contributions will make a difference to Liam’s life. We have found hope in the intensive 14-week intensive full-time neurological rehabilitation program offered by the Spero Clinic in Arkansas, United States (https://www.thesperoclinic.com), which is changing the lives of children and adolescents like Liam. Families from more than 34 countries have completed the program and their gains can’t be ignored. Children like Liam now have their lives back and are not suffering from constant excruciating pain. Liam has been offered a place starting in November 2023, and we need urgent financial help to get Liam there. With your help, we have every reason to be hopeful.

This is the most important journey of Liam’s life. We appreciate your much needed help in raising funds to cover the costs of the four-month neurological rehabilitation program, accommodation and flights to the United States. We have hope and faith in a brighter future for Liam, but we can only do this with your care and help.

On behalf of myself and Liam, we thank you for your generous support