Couple seek help moving special boy

LISA KNIGHT
Last updated 12:00 06/08/2014

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The Moore-Smith family had their lives tipped upside down with the arrival of Marley almost four years ago.

Marley Moore-Smith was born with an extremely rare condition called CDKL5.

The genetic disorder causes developmental delay, vision impairment and uncontrollable seizures, and means he can't walk, stand or even sit up.

Marley's parents Jason Smith and Claire Moore said although they were used to it now, life was a lot harder.

"It takes a lot longer to get anywhere, it takes a lot longer to get out of the house because he's got feeding equipment that has to come and he's got all different things he uses and also his health. If it's not a very nice day, you think twice about going out because he has so many chest infections," Moore said.

"Financially, it's a real burden because we were both working. Since Marley's come along, obviously it's not his fault, but Claire can't work," Smith said.

"You learn to live with it but people who don't have kids with conditions will never know. We didn't know or fully understand how hard and difficult it is but he's been fantastic for us, in a way, he's made our family a lot stronger," he said.

At almost 4 years old and weighing 17 kilograms, Marley is getting too big for his parents to easily transfer him into the family vehicle.

"It is getting harder and harder and he's outgrowing the car because he has a special carseat but the front seat can't go any more forward for more leg space," Moore said.

"He's quite a big boy now, and growing normally, which is quite unusual."

The family had applied for funding to buy a mobility vehicle, which would mean Marley's mobility chair could easily be moved in and out of the vehicle, but another $20,000 to $30,000 would still be required, Moore said.

A Give A Little fundraising page had been set up to raise funds for Marley.

"It's great but at the same time really embarrassing, you feel embarrassed asking people to help you because you want to do it on your own, really. It's really humbling, I think it's amazing what people do," she said.

Smith said while they were not expecting anything, it would make life easier for the whole family.

"I think the main thing is it's going to make it easier on Marley, to get him in and out of a vehicle, because he doesn't hold on to you when you pick him up. It's a dead weight and it's starting to hurt him now."

"It's going to help us a lot but it's going to benefit him more."

To give a little for Marley visit givealittle.co.nz/cause/mobility4marley.

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- Manawatu Standard

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