Legacy. For mother-of-one Demi Whiteley, the only gift she can ask for her son’s first birthday is to buy more time.
Her father and grandfather to George Ian Wilson, Ian Whiteley fondly known as Spud, lives with multiple sclerosis (MS).
A condition of the central nervous system, MS interferes with the nerve impulses in the brain, spinal cord and optic nerves. There is currently no known cure.
As George’s first birthday approaches on Monday May 29, Demi and partner Brayden Wilson are asking family and friends to grant a precious wish in donating to MS Australia in lieu of gifts.
It comes as World MS Day (Wednesday May 31) follows George’s milestone.
“George has given Dad a new lease on life,” Demi says.
“His face just lights up when he sees George and they just sit and smile together.
“The bond they have, even though Dad can’t connect with him physically, it just goes to show you don’t have to be able bodied to share a relationship like that.”
Ian, who lives in Wynyard, was diagnosed in 2008 and since then his condition has deteriorated rapidly.
Demi’s grandmother on her mother’s side of the family, Lynette Billing, has lived with a more mild form for more than a decade. Demi also has a third cousin living with MS.
“It’s really quite numbing because all you can do is watch,” Demi says.
“That’s the scary thing. Dad always said he wanted to retire early, but this isn’t retirement, this is waiting for the worst.”
At the time of the diagnosis, Demi was completing her secondary schooling, reeling from her parents’ separation and coming to terms with her mother’s bi-polar.
“From then my future just completely changed,” she says.
“I felt like it wouldn’t revolve around me and there were other considerations I hadn’t had to think about before. It was so life changing.
“I decided I didn’t want to have a child until Dad passed away because I didn’t want them to develop a connection and then have to deal with that grief. I didn’t want to get married because my Dad wouldn’t be able to walk me down the aisle.”
However since welcoming George into the world, Demi has been further motivated to advocate for the cause.
“Dad has always encouraged me to do stuff for others as he has,” she said.
“I think he will be proud of me. And I know he is so proud of George.”
Brayden added: “I know the one present, if he could ask for it, would be to have his Pop around longer, it would be the best present.”
Ian is now completely paralysed from his neck down and requires an electronic wheelchair controlled by a head piece. However, now his MS is attacking the mobility in his neck and head and limiting his speech.
He requires round the clock care, but lacking services mean he only has a paid carer with him during meal times and to assist him in getting in and out of bed in the morning and evening.
A longtime mate, Anthony Groenewege volunteers more than 20 hours a week to household chores for Ian.
“One of the biggest things has been seeing how many people have distanced themselves, acting like it’s contagious, and the people he has always helped out aren’t around anymore,” Demi says, adding that Waratah-Wynyard Council has held two working bees in the past decade in support of Ian.
With a goal of $1000 in mind, Demi hopes donations in lieu of gifts will assist families affected by MS by providing support and bringing us one step closer to discovering a cure.
To donate to the appeal go to www.doitforms.org.au and search ‘Do it for Spud’.