Help Amie get mov­ing

Central Leader - - NEWS - By SARAH ROBERTS

AMIE Cuth­bert­son loves go­ing on out­ings with her fam­ily.

But it’s get­ting more dif­fi­cult to trans­port the fiveyear-old, who is se­verely dis­abled and uses a wheel­chair.

The West Auck­land young­ster weighs 17.9kg and is get­ting too heavy to lift in and out of the car.

Amie is one of few to be di­ag­nosed with a rare form of KCNQ2 de novo gene mu­ta­tion. She can’t walk, talk, sit or hold her head up. She is fed through a tube and is vis­ually im­paired.

Her par­ents An­drea and Chris want to get their younger daugh­ter a dis­abil­ity van so they can get to her med­i­cal ap­point­ments easily. And hope­fully have more out­ings as a fam­ily.

‘‘Amie can’t help you when you lift her and it’s like car­ry­ing a new­born baby but heav­ier,’’ An­drea says.

‘‘Her life is chal­leng­ing enough al­ready and trans­port­ing her to the mul­ti­ple hos­pi­tal vis­its and doc­tor ap­point­ments with her wheel­chair is just not prac­ti­cal with a reg­u­lar fam­ily car any more,’’ she says.

A sec­ond-hand dis­abil­ity van is likely to cost the fam- ily at least $20,000.

They would like to get her trans­port that would be suit- able for her when she is older. But a larger van could cost more.

A Givealit­tle page has been set up to raise funds to buy a van for Amie and so far more than $8000 has been raised.

‘‘We’re very grate­ful for the do­na­tions. We never ex­pected to get a lot of money to­wards the van and we are also work­ing to­wards this our­selves but it’s hard,’’ An­drea says.

The fam­ily moved into a more suit­able home to cater for Amie’s needs but her par­ents had to take on a higher mort­gage. An­drea has gone back to work for three days a week to help with the ex­tra hous­ing costs and to pay for the van.

She looks af­ter Amie when she’s not work­ing.

‘‘Life is like a roller­coaster at times. One minute all is well with Amie and then the next she can be in hos­pi­tal.

‘‘Hav­ing a dis­abil­ity van for her trans­port needs would give Amie the chance to en­joy the things we all take for granted,’’ An­drea says.

The Cuth­bert­son fam­ily trea­sure happy mo­ments like this one with their youngest daugh­ter Amie, 5, who is se­verely dis­abled. She is pic­tured with her sis­ter Mi­caela, 9, left, and par­ents An­drea and Chris.

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