Family rallies to fight rare genetic disease

File 12 (2) TBW Newsgroup
ALL IN IT TOGETHER: Amelia Gwilym with the Leitch family who are campaigning to raise both awareness and funds for neurofibromatosis

File 12 (2) TBW Newsgroup
ALL IN IT TOGETHER: Amelia Gwilym with the Leitch family who are campaigning to raise both awareness and funds for neurofibromatosis

A LENGTHY personal battle with Neurofibromatosis – a condition which causes tumours to form in the brain, spinal cord and nerves – has inspired a Mount Gambier family to raise awareness and funds for the illness.

Emily Leitch is spearheading the fundraiser, held outside Coles Mount Gambler from 8am tomorrow, after watching helplessly as the condition, which is commonly non-cancerous, took control of her husband Jason’s life.

“I met my husband in 2004 when we were both working in the bakery in Darwin,” Ms Leitch said.

“At that time he was an apprentice baker, he was doing what he loved.”

Ms Leitch said it took some time before the reality of the situation became apparent.
“Jason kept complaining about blocked ears,” she said.

“We went to doctors again and again and they put it down to tropical ear which made sense to us as we did swim quite a lot.

“It wasn’t until he started complaining about headaches as well we found out he had a tumour on his ear.”

Jason was soon referred to an ear, nose and throat specialist who sent him to a neurosurgeon in Adelaide.

“Around six months after we were told he had a tumour, we saw the neurosurgeon who officially diagnosed him with Neurofibromatosis,” she said.

“Our whole world was turned upside down because we went in there with tropical ear and came out with this disease.

“We called our parents because we were just in shock and did not know what to do.”

Moving from Darwin to Adelaide, the couple stuck together during the process, staying with Jason’s sister while waiting for surgery to remove the tumour.

“We did keep getting pushed back because of emergencies so it was around one month after he was diagnosed before he got in for the surgery,” Ms Leitch said.

“He couldn’t work and I had come to Adelaide with no job so was working a few casual jobs around the city at the time.

“Yet after the surgery they told us he would have to get another tumour removed on the other side of his head which would lead him to becoming completely deaf.”

The specific tumours Jason needed removed were against his hearing nerve, which doctors said would cause him to become completely deaf once removed.

Heartbroken at the news, Ms Leitch decided to make the most of the time they had and assisted Jason in creating a wish list.

“I asked him what he wanted to do before he went completely deaf,” she said.

“His answers were simple, he wanted to hear our wedding vows, our children say Dad and to buy our first home in Queensland.

“So we did all that, we married and brought our first home and I was pregnant almost straight away.”

Pregnant with their second child, the Leitchs took their first child Lillie to get tested for the disease, which can form in childhood right through to early adulthood.

“The lady came in and turned to me because Jason’s hearing wasn’t that great by that stage and told me she had tested positive,” Ms Leitch said.

“I will never forget the look on Jason’s face when he asked me what they said and I had to tell him myself.”

One month after giving birth to their second child, Ruby, the Leitchs traveled to Melbourne for Jason’s final surgery.

“The surgery went for 12 hours because not only did they remove the tumour but they also planted cochlear implants which would help his hearing,” she said.

“They connect to the electrodes in his brain and is similar to a walkie-talkie.

“He doesn’t actually hear but between lip-reading and the 11 electrodes that do work, it tricks his brain into thinking he can hear.”

Now the family is dedicated to helping others with the disease by fundraising.

“This is the first year that we have done this fundraiser but it will not be the last,” Ms Leitch said.

“We are hoping to make it an annual event and make it bigger and better each year.”

With the help of close family friend Ameila Gwilym, Ms Leitch has secured donations and merchandise to further raise awareness about Neurofibromatosis.

“We are hoping to raise a couple of thousand dollars, but we are just going to go all out and have fun with the event,” she said.

Ms Leitch said she is humbled by the generosity of the local community.

“We have had the bread donated, the sausages donated everything it has been amazing,” Ms Leitch said.

“Words cannot describe how grateful I am for the businesses and local community members that have gotten on board and helped this become a reality.”