Carter in­spi­ra­tion be­hind event

CHB Mail - - NEWS -

Mered­ith Kingston sits amongst a be­daz­zle­ment of Christ­mas or­na­ments, dec­o­ra­tions, gifts and sweets.

“How long have we been do­ing this?” she calls across the Christ­mas be­decked shop to her part­ner Mark Drake. “Eight years?”

The cou­ple agree on about eight years, ever since their twins Carter and Gabby were 2.

Carter is one of the in­spi­ra­tions be­hind the an­nual event that Mark and Mered­ith hold at their Waipawa shop, King­fisher Gifts. The Ron­ald McDon­ald House Fundraiser Day is a Christ­mas cel­e­bra­tion with a dif­fer­ence.

“It’s like a party, ev­ery­one loves it,” says Mered­ith.

“It’s to show how grate­ful we are to be in this com­mu­nity. It’s to cel­e­brate that Carter’s here, that so many peo­ple have helped us; in CHB, Hawke’s Bay, Auck­land, with physio, oc­cu­pa­tional ther­apy, spe­cial ed­u­ca­tion . . . all have helped him to have a fu­ture we per­haps didn’t think he’d have.”

Carter was born with a pro­gres­sive dis­or­der that still, af­ter 10 years, de­fies di­ag­no­sis. He is tube fed 17 hours a day, his im­mune sys­tem is com­pro­mised and of late his mo­tor skills and eye­sight are also be­ing chal­lenged.

“The more he does, the more pain he is in,” says Mered­ith.

“Things knock him back re­ally quickly, but he does bounce back. He bounces back from things you don’t think he’ll come back from.”

But de­spite the chal­lenges, Carter is nearly as tall as his mum now, is a vo­ra­cious reader and has this year man­aged to in­crease the hours he spends at school.

“He’s good at com­pen­sat­ing and he’s not a com­plainer. He just gets on and deals with it,” Mered­ith says.

Deal­ing with it in­cludes physio ev­ery day and swim­ming ev­ery week to re­tain as much strength as pos­si­ble. He uses a wheel­chair when faced with chal­lenges of dis­tance, fa­tigue and keep­ing up with his Waipawa School class­mates at lunchtimes and will soon be us­ing tech­nol­ogy to com­pen­sate for his di­min­ish­ing mo­tor skills. He is sup­ported at Waipawa School by the staff and two “amaz­ing” teacher aides.

The fundraiser day is a big ac­knowl­edge­ment of the role Ron­ald McDon­ald House has played in the fam­ily’s lives over the last 10 years.

“We travel to Star­ship Hos­pi­tal a lot. ‘Only’ four times this year but over the 10 years . . . well over 200 hun­dred trips. That’s where Carter’s pain man­age­ment team is, they re­search world­wide for dif­fer­ent in­fu­sions and medicines, things that have ever been tried be­fore. That’s where we go to change his feed­ing tubes. And ev­ery time we stay at Ron­ald McDon­ald House there will be some­one else there from CHB. It’s a vi­tal, amaz­ing fa­cil­ity.”

Staff at Star­ship also fre­quently video con­fer­ence with Carter’s med­i­cal team in Hawke’s Bay, headed by pae­di­a­tri­cian and for­mer Chil­dren’s Com­mis­sioner Dr Rus­sell Wills.

“He’s amaz­ing — Carter’s biggest ad­vo­cate. He pushes all the time for Carter to have a bet­ter qual­ity of life. It’s the only life he’s known but he de­serves a good qual­ity of life.”

That the fam­ily has cho­sen Christ­mas for the cel­e­bra­tion and fundraiser is no ac­ci­dent. Mered­ith’s pas­sion for Christ­mas comes from mum Jackie Kingston.

“Mum loved Christ­mas, she had a huge Christ­mas col­lec­tion — six dif­fer­ent themed Christ­mas trees that we all helped dec­o­rate.”

It takes Mark and Mered­ith three days ini­tially to set their shop up for Christ­mas.

“Then we add more each day as stock keeps com­ing in. There’s some beau­ti­ful stuff this year, you can’t help but get ex­cited. It’s so much fun and ev­ery­one that comes in en­joys it so much.”

Mered­ith Kingston with her chil­dren Holly, Carter and Gabby Drake.

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