Run for their lives

Scenes from last year's Million Steps fun run and walk.
Scenes from last year's Million Steps fun run and walk.
Jason Mckay with newborn Tylan. Jason's tattoo is a tribute to deceased daughter Taylin.

Jason Mckay with newborn Tylan. Jason's tattoo is a tribute to deceased daughter Taylin.

RUNNING

NEXT month's Traralgon Million Steps fun run for Spinal Muscular Atrophy in honour of Taylin Mackay will be the third of its kind, but the first for the newest member for the Mackay clan.

Healthy baby boy Tylan, named for his aforementioned sister who tragically died from SMA in 2008, was born prematurely to Lee and Jason Mackay in July, and will be among hundreds of participants in this year's pram friendly run and walk fundraiser.

SMA is a genetically transferred degenerative motor neuron disease - the most severe of its kind - and has no cure.

With a one in four chance of inheriting the deadly illness, Tylan's pregnancy came with an anxious wait.

"She (Taylin) has given us that message that we're carriers and to be tested," Lee said.

"It's quite a tough process to go through to have another baby because you've got to have a (screening) test at 12 weeks... then you've got to wait.

"We're lucky to have gone on and had three healthy boys (since Taylin)... we never feel complete but we're sort of finished now as a family... three boys and a girl."

Taylin would have turned six in September, a month which, along with the Million Steps tribute in November, is a sentimental time of the year for the Mackays.

"It doesn't only affect (10 year-old daughter) Kyla who met her... but also the other boys," Lee said.

Five year-old Link has taken to asking about Taylin and why he never met his sister.

"They enjoy looking at photos and watching her video and they don't really understand," Lee said.

"I think having another baby brings it all back (too); Ty now has his first cold and you just panic.

"You know how sick babies can get really quick... one minute Taylin had a little cold the next minute she was being airlifted to the Royal Children's (Hospital) on life support."

Last year's Million Steps fun run attracted more than 600 adults and a host of children, raising $35,000 for SMA Australia to secure vital equipment and continue research for a cure.

Human clinical trials are moving forward in the United States, and an improved screening test for genetic degenerative diseases, developed in March, has seen SMA Australia step up its awareness campaign.

"That's an amazing step forward... we all get educated about cervical cancer and all sorts of other things that could happen to us, this (the new screening test) is just another way to educate people about the genetic side of it," SMA Australia chief executive Julie Cini said.

"It's just provoking that choice and thought process (to be tested for genetic diseases as well)."

Cini said money raised at this year's Million Steps would go toward new cough assist machines, priced at $10,000 each, to meet increased demand for SMA victims lacking cough reflexes.

In Australia alone there are currently half a dozen babies living with lethal type one SMA and are doomed unless a cure emerges in the immediate future.

About 60 to 70 children in Australia live with type two or three SMA and are typically wheelchair bound.

To take part in this year's run, which starts at the Traralgon Tennis Courts car park at 10am on 10 November, register online at millionsteps.org.au/events/ and like the facebook page for updates.

The event features four kilometre and 8km distances and will be followed by a barbecue and entertainment from Koko the Clown, jumping castles, raffles, bakestands and more.

For more information phone Lee Mackay on 5175 0751, 0402 115 372 or email leejasem@bigpond.com

Alternatively phone the SMA Australia Office on 9545 3633 or email

reception@smaaustralia.org.au

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