By LACHLAN MOORHEAD
NINE-YEAR-OLD Marshall will stop at nothing to have his mother’s agonizing illness recognised by the World Health Organisation.
Marshall’s mum, Samantha Gaillard, was diagnosed with trigeminal neuralgia (TN) in April this year, a neuropathic disorder which results in episodic bursts of debilitating pain in her face which keeps the Narre Warren South mother of three housebound and unable to work or drive.
TN, also referred to as ‘Suicide Disease’ because of the intense pain experienced by sufferers, is not officially recognised as an illness by the World Health Organisation (WHO) and has no cure.
Marshall has joined the fight to have his mum’s disorder officially recognised by the WHO and listed on its Health Topic List. He has added 341 signatures to the international petition, bringing its total to more than 12,000 which were presented to the WHO in October.
Early warning signs of TN include mild pain or ’pins and needles’ and once the excruciating spasms begin, they can collectively last hours.
“It is the worst pain known to man,” Samantha, 37, said.
“I was lucky in the sense that it only took me three months to find out what was wrong with me, many people I have spoken to have spent years, or even decades, finding out what was wrong.
“It’s been a horrible year for me and my children.”
Marshall has made it his mission to inform as many people in Casey, and worldwide, about TN as he can. He has sought signatures from schools, his basketball team, overseas relatives and visited shops with his two older sisters Zara, 12, and Minnie, 10.
Marshall, a year three student at Berwick Fields Primary School, organised the petition for a school project in which he was required to research someone ’inspirational’.
“My son wanted to do his assignment on me but I explained to Marshall that he should think bigger,” Samantha said.
“He found a lady in America who we have never met but she has done so much for us.”
Samantha speaks of Toni Saunders, from the American state of Massachusetts, who is the founder of the Trigeminal Neuralgia and Me (TNNME) international support group and instrumental in organising the inaugural awareness day for TN on 7 October this year.
On this day buildings throughout America, Canada, New Zealand, England, Qatar and China were adorned with teal lights to represent the illness.
“Marshall contacted Toni via email and she was very happy to assist Marshall with his homework task.
“From that a new friendship was formed and his homework was a success,” Samantha said.
“The point of the petition is for the WHO to recognise this illness which in turn will allow funding to find a cure.
“There are tablets with intense side effects or some operations with a low percentage of success but no cure to this.”
Toni said Marshall’s initiative has seen him quickly become one of the TN ’Awareness Fighters’.
“Marshall, being as young as he is, took it upon himself to help millions of people, not knowing that he’s part of history and we’re so ever grateful and very, very proud of him,” Toni said.
“The 300 and counting signatures that Marshall collected will be going to the World Health Organization. He is helping millions of people around the world.”
Samantha believes her TN is delayed onset pain from a car accident she and her partner were involved in three years ago in which their vehicle flipped and both received severe whiplash.
“I saw countless doctors and eventually went back to my childhood doctor who was able to diagnose it as TN,” Samantha said.
“Once I was told it TN, I saw a neurologist who told me I’d have to live with it. Then I started researching it online and came across Toni.”
Samantha has marvelled at the resilience of Marshall and his sisters who have had to attend countless school events this year without their Mum.
“I am very proud; it’s so amazing for children to be so unselfish considering the heartbreak they’ve gone through,” Samantha said.
“I miss out on a lot of things and they never complain once.”
To sign the TN petition visit www.tnnme.com or visit beyondblue.org.au, call Suicide Helpline Victoria on 1300 651 257 or Lifeline on 131 119 for assistance or to talk to someone you can trust.
