By DANI ROTHWELL
A BERWICK woman fighting multiple sclerosis is aiming to raise $70,000 to get treatment in Russia.
Vanessa Weygang’s fight with MS began in 2009 at age 38 when she needed replacement glasses and underwent a normal eye test.
When her right eye was covered, she couldn’t see any letters and asked where they had gone.
“This was the start of my new normal,” she said.
Doctors discovered she had optic neuritis and told her she either had multiple sclerosis or a brain tumour, but not to panic.
Scans and a lumbar puncture revealed her diagnosis: relapsing-remitting multiple sclerosis.
Since then, life has been a daily struggle, but Vanessa is still fighting.
She has decided to take her life into her own hands and travel to Russia to receive Hematopoietic Stem Cell Transplant (HSCT).
The treatment and related costs will be over $70,000, so she’s calling on the community to help her out.
It’s a treatment that removes the stem cells from Vanessa’s body and freezes them while she is given four days of chemotherapy.
This combination essentially resets her immune system, so it will stop attacking itself.
She first came across this treatment through a program on television in which she saw a woman have her MS halted.
While HSCT is available in Australia, Vanessa said it was still in trial for auto immune diseases and she wasn’t classified as disabled enough.
“I don’t want to get to that stage with the hope I can have it done in my country,” she said.
“HSCT will halt my disease; it will not reverse the damage already done.
“To get the treatment done in Australia, I’d have to be really struggling or completely unable to walk and in a wheelchair.
“They’re looking for the cases that can be miracles and I don’t want to get bad enough to be that for them.”
Vanessa will spend 30 days in the hospital in Russia before coming back to Australia.
She will then live a fairly isolated life for three to six months, and up to one to two years in recovery until she’s given the all clear after the treatment.
Vanessa recently held a fund-raiser movie night that raised $5000 and had more people wanting to attend than they could seat.
She’s hoping to continue to run creative fund-raisers that can involve as many people as possible.
To donate to support Vanessa, visit: http://www.gofundme.com/3u7qus467q or search Facebook for Ness Beats MS to join her community.
What it’s like living with MS
“I have MS but MS will never have me.”
These are the words Vanessa Weygang stands by to remain optimistic as a wife and mother of three children.
“I feel I am playing Russian Roulette and I’m scared of the long-term outcome,” she said.
“With MS you go one way or the other mentally – I definitely went down the bad path at the start, but I have three kids who need me.
“I had to pick myself up and look after them so I need to look after myself to look after others.”
Every day can be a struggle to do what seem like simple things.
Vanessa is struggling to walk and needs to actively think about each muscle that needs to work in order to walk in a straight line.
“It’s funny though – as much as walking is hard, I can run forever because it’s such a natural thing,” she said.
“As soon as I stop running, I struggle to stay upright.”
Diet, medication and a lack of exercise can all make her condition flare up, with little energy or ability to do much at all.
“If I do things early, I’ve got the energy – the movie night was really hard because it was late and I’m normally in bed by 7pm,” she said.
The HSCT can only halt the progress of her MS, but the damage already done is irreversible.
“The numbness down my left side and lack of moving in my left hand, even the vision in my eye may not come back fully,” she said.
Despite everything, Vanessa is focusing on living life to the fullest at the moment.
“I’m training for the Melbourne Marathon and doing yoga,” she said.
