Meet Evan Upton, the Goulburn Crescent School’s newest kindy kid. If you ever have the pleasure of meeting Evan you’ll know he has this great little smile - that you’d have to be made of stone not to return, it’s just that infectious.

However there is a lot more to know about Evan. Behind that mischievous grin is a little man fighting hard to overcome the odds.

Evan is affected with a degenerative brain condition, and he is totally reliant on his parents and aides for his everyday needs.

He has the cognitive development level of a one-year-old.

The prognosis for Evan is not known at this stage, but as time has gone on he has lost fine motor skills and his balance, and while he can use a walking frame it is only for short periods.

He now needs to spend more and more time in his wheelchair.

Medical investigations into his condition are continuing, but answers are elusive. Meanwhile, his parents solider on, taking him to early intervention, school and therapies.

His dad and granddad are championing Evan’s cause, with a planned 1400km bike ride across the Nullarbor Plain.

It is often said that raising a child with special needs is a blessing, but it is especially a challenge. It is challenging for parents whose skill set needs to change dramatically to help their child.

You become a therapist, a nurse, a nutritionist, a Filofax of medical knowledge, your child’s personal assistant, interpreter and most of all their advocate. In return we get the joy of small victories, such as an unexpected smile in response to a therapy.

We learn to value the small stuff, stuff that we would ordinarily take for granted. I used to get so cranky when people told me that I was blessed with my autistic children.

It took a lot of strength not to act on the urge to kidnap them and force them to endure an evening of chaos at my house, thinking that only then they will truly appreciate what a blessing really is (their freedom perhaps?).

For all the difficulties my kids have put me through, and it can sometimes feel as if they are putting us through hell (we came close to losing one of them last year), I just cannot imagine being in the position of Evan’s parents, of having to watch my child slowly slip away.

Parenting a child with any kind of condition takes things to the next level, often an expensive one.

Hospital and doctors visits, therapies, special diets and medications to administer, all take their toll on parents physically mentally and financially.

Doing so much for your child, doesn’t leave much time to go and earn the money needed to pay for all this. To this end a charity golf day has been organised to help raise funds for much needed equipment.

Evan’s parents Chris and Hayley need to pay for modifications to a vehicle, so it can accommodate his wheelchair.

As he grows lifting him from his chair to a car seat is getting harder, making these modifications necessary.

So here comes the part where I ask you to help.

You can join the golf day happening on April 2, your $50 registration fee gets you a BBQ lunch, a couple of drinks and your game, and not to mention raffles and lucky door prizes also happening on the day.

Contact Melissa for more info 0402 484725.

If you don’t golf a donation, however small, would be appreciated and you can do so via the Police Credit Union where a trust has been set up for Evan (BSB 815000 Account 274017).