For over 12 years, Rachel has been battling a cruel neurological condition that causes excruciating pain centred around her right eye. These attacks are unpredictable and can happen without warning at any time. The pain is so extreme that Rachel requires IV Fentanyl (80-100 times stronger than morphine) to control the pain, in conjunction with numerous other surgical-level pain medications, anaesthetics, and sedatives. In essence, she is rendered unconscious for days at a time to survive through the worst of it.
Over the years at two of Australia’s most prominent children’s hospitals, Rachel has been subjected to a long list of treatments including preventative and acute medications, drug infusions, nerve block injections and radiofrequency ablations. She has undergone countless MRIs, CT scans and has had many Intensive Care admissions, during one of which she was placed into an induced coma because of medication complications. None of these treatments have managed to prevent the cycles of pain, with Rachel having been hospitalised 25 times or more in the last 2 years alone.
As parents, it has been heartbreaking to watch her suffer as we have been helpless to do anything about it. We have had some of the best Australian minds in medicine working to solve Rachel’s puzzle and have had no diagnosis – up until now.
In desperation, we recently reached out to a Neurosurgeon in the United States, Dr Mark Linskey, who specialises in cranial neurological conditions. This had led to a breakthrough in identifying the cause of Rachel’s pain. A condition called Trigeminal Neuralgia.
Trigeminal neuralgia is considered one of the worst pains that a human being can have. It is known as ‘suicide disease’ as the condition is so relentless. It is caused when the trigeminal nerve which supplies nerves to the face is compressed or aggravated by blood vessels or arteries near the stem of the brain. It also worsens over time, with attacks becoming longer and more severe.
Trigeminal neuralgia is a rare condition in children. It may also exhibit varying symptoms and often does not present clearly in scans, which challenge medical practitioners attempting to diagnose, and indeed resolve it.
A life changing brain surgery, Microvascular Decompression (MVD), offers the greatest chance of complete pain relief. The world’s best paediatric MVD neurosurgeon, Dr Linskey, has performed the greatest number of surgeries for paediatric patients in the world, and changed their lives forever. We hope that Rachel will join that list.
This condition has robbed Rachel of a normal life – the opportunity to fulfil her potential in basketball, karate, school and in living a full and active life with her friends and family. It doesn’t need to be this way.
We are raising money to offset the $175k++ AUD cost of the surgery alone in the United States in October.
Please help to end Rachel's pain. This is our last chance to get our daughter back and turn her life around.