A Body on Fire! - Help to Free Moana from a Life of Pain
Our daughter Moana was a wonderful child, every parent could wish for. She was happy and smiling. She was a talented and passionate dancer. She had everything going for her, but that all changed after a seemingly innocent ankle injury changed her life forever. Moana has since been diagnosed with Chronic Regional Pain Syndrome (CRPS) a debilitating, insidious disease.
What is CRPS?
CRPS is a rare neurological malfunction of the central nervous system which affects limbs (after an injury) resulting in constant pain 24/7 (completely disproportionate to the original injury). Many sufferers describe the pain as being 'Eternally on Fire'.
Moana now suffers relentless, excruciating pain all over her body, and has suffered from this for the past six years. The pain she endures on a daily basis (according to the McGill Pain Scale) has been described as being worse than childbirth. There is no known cure, and there is no medication that can be prescribed for relief from the excruciating pain.
How has this affected Moana?
Moana's condition deteriorated to the point where she was constantly crying and screaming with pain, the slightest breeze could trigger a severe pain reaction in her leg, and Moana was unable to walk, and was confined to a wheelchair. We had been researching into known therapies and eventually we found a promising program at the Sydney Children Hospital (Sydney, Australia) which gave us some hope. We moved from Greece (my wife Joanna is of Australian Greek descent) to Sydney, Australia, where Moana was able to attend the physiotherapy program at the Sydney Children Hospital to try to combat this disease.
Sydney Children’s Hospital Therapy
The therapy treatment lasted ten long weeks, with Moana bravely enduring 10 hours of physio-therapy each and every day, in agonizing pain as the therapists tried to desensitise, and reset the pain perception in her neuro pathways. The therapy was partially successful, and enabled her to walk again, however, the unbearable pain she experiences remained constant.
One and a half years after that therapy, and Moana's constant pain has again deteriorated, and is now too much for her to cope with. She now has blackouts and seizures (non-epileptic) with full body convulsions which can throw her off the ground. These violent seizures can occur once or twice a week, lasting anywhere from 1 minute to up to 2.5 hours. Recovery from these episodes is long; typically, 3-4 days. The seizures and recovery time affect every aspect of her life, from her physical well-being and mental state, to the negative impact on her education, and social interactions with other children.
After much deliberation, Moana and her mother decided to return to Greece, to once again be surrounded by family and friends in the hope that this would be of some comfort to her. Unfortunately, her emotional and physical well-being has deteriorated so much within the last year that she has now lost all hope of recovery or improvement of her situation – she is losing the will to live.
This disease is known as the ‘Suicide Disease’ with 40% of sufferers committing suicide – unable to live a life of chronic unbearable pain.
In November 17th 2019, we read an ABC News article about the Spero Clinic (thesperoclininc.com ): a Holistic Medical Clinic in Arkansas, USA. The Spero Clinic has successfully treated Chronic Regional Pain Syndrome. The article featured a young Australian girl, Stella Artuso, who is the 6th Australian young person to attend the clinic. Stella had a positive outlook after meeting 13-year-old Romeo Paora, another Queenslander who has just returned home from the treatment "pain free".
Now we finally have real hope! This clinic is the only centre in the world, with lasting success in treating this disease. In the past year the Spero Clinic successfully treated five (out of five) Australian children who completed this revolutionary therapy program. That's a 100% success rate! All five children remain pain-free, and now have their whole lives to look forward to.
We have been in touch with the Spero Clinic, and we have now been offered a placement for Moana's treatment in early 2020. However, the total cost of this 12-week therapy program (including travel & accommodation for Moana and her mother) is an estimated US$55,000 (which is AU$79000!!!) depending on the case. I'm sorry for the confusion but i made the mistake with the different currencies. As the gofundme was started in Australia the collected amount was in Australian Dollars, but the therapy was, because it is in the US, in US Dollars! I apologise dearly to all the amazing people out there, to
the whole community for my mistake! This is a rough estimation as we don't know how the treatment will work and what else will be necessary for our daughter. Any additional funds will go to Moanas further treatments and education.
All children deserve a life free of pain which is something many of us take for granted.
This is our last chance for Moana!
We greatly appreciate any support you can offer that will enable Moana to have this treatment she so badly needs to give her a chance for life, and a chance for a future.
- Aide L
- Stoffus B.
- Kerstin Bazin