'We thank God every day for the miracle that is Reef’

By Kirstin Buick
19 November 2013

Two years ago Reef Carneson (5) captured hearts worldwide when his battle against graft versus host disease (GVHD) after a bone marrow transplant at the age of 11 months made headlines.

Ryan and Lydia Carneson with Reef and his sister, Payton.

The boy was diagnosed with leukaemia when he was five months old.

GVHD caused his organs to begin to give in one after another and the best treatment his parents could find for him was in Los Angeles, America.

Lydia and Ryan Carneson are still in the US with Reef and his sister, Payton, and life is hard for them.

Reef’s granny, Charmeon Carneson, says thanks to the generosity of the public and internet fundraising campaigns the family have been living in the US after selling all their possessions. But they’re still living on donations and it’s a hand-to-mouth existence.

“They’ve been in America for two years and Reef is doing well,” says Charmeon. “But they’re battling to stay there; Ryan couldn’t get a job because they‘re in the country on a medical visa.” About a year ago Ryan began studies as a chef specialising in confectionery and the family were able to stay on because of his study visa.

“It looks as if they’re going to have a sombre Christmas,” Charmeon says. “Ryan nearly couldn’t graduate on 13 December because $4 000 (about R40 000) of his fees were still outstanding. But the people on Reefie’s Facebook page and his family have again managed to raise the funds.”

But the family is still battling to find the money for daily and medical expenses. “Reefie must soon be fitted with a hearing aid costing about $2 000 (R20 000). Earlier this year Lydia told YOU she once fainted from hunger and that Ryan sometimes survives on only a cup of coffee a day (YOU, 13 June 2013).

Charmeon and her husband, Don, will be visiting the Carnesons in America in two weeks’ time to offer them moral support because the couple are stressed out and praying that enough money will be raised every month to pay their rent, medical expenses and buy food until Ryan can start work. “But I know if they had to do it all over they would do it exactly the same way,” says Charmeon. “Every time you see the slow but good progress of their miracle child you realise that again." There’s a little light at the end of the tunnel, says Charmeon. “Ryan’s study visa allows him to stay in America and work for a year after graduating. He’s now desperately looking for a job. His salary should provide some financial relief for the family.”

'Every time you see the slow but good progress of their miracle child you realise that again.'

Meanwhile Reef is responding well to treatment, which includes 15 chronic medications a day. His body is still rejecting the bone marrow so he’s being treated with steroids.

Reef and Payton spend day after day in total isolation in their flat because Reef’s immune system is so weak. The slightest contact with other children could result in a fatal infection. Payton can’t have contact with others because she might pick up an infection and infect her brother.

Reef Carneson (5) captured hearts worldwide when his battle against graft versus host disease (GVHD) after a bone marrow transplant at the age of 11 months made headlines.

“It looks as if Reef can be weaned off the steroids by the end of the year, which will allow him to build up his immune system. This will make it safer for him to travel to South Africa."

Charmeon says if it weren’t for the generosity of the public Reef would have died long ago. “We thank God every day for the miracle that is Reef.”

If you want to help cover the Carnesons’ expenses, email Charmeon at charmeonc@gmail.com or SMS REEF to 38771 to donate R10.

-Danél Blaauw

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