'He loves school!' Hope for Reef Carneson after skin cancer blow

By Hilda Van Dyk
10 June 2016

Reef Carneson’s family have lived with the fear of losing him for seven years. But despite setback after setback, little Reef goes to kindergarten – skin cancer and graft-versus-host-disease or not

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He simply loves school says Reef’s grandmother, Charmeon Carneson. “When Reef left SA he was tube-fed and weighed 8 kg, was unable to stand, walk, talk, eat. So the day he started school and even the first real birthday party he had with other children – these were all amazing highlights, giving so much hope.”

The boy first crept into people’s hearts seven years ago when he was diagnosed with leukaemia at the age of just five months. At 11 months he had a bone marrow transplant, but then got graft-versus-host-disease, a rare complication caused by the transplant.

When you ask Charmeon how it’s going with her grandson, she rattles off the medical complications. “Reef has damage to most of the organs in his body. He cannot form tears so suffers from chronic dry eyes, he is unable to communicate verbally, is unable to open his hands because of contractures from GVHD, he cannot straighten his legs and has almost no mobility in his ankles. He is also hearing-impaired and has to wear a hearing aid,” she says.

Reef and dad Ryan. PHOTO: Supplied Reef and dad Ryan. PHOTO: Supplied

But looking at the photographs Charmeon sent us, it’s not the sores on his head that look like burn wounds that attract your attention, but the little fighter’s smile, especially when he’s playing with his dad Ryan or at school with his friends. One thing’s for sure – nothing gets Reef down.

Reef attends the Symnes Elementary School in Cincinnati in America, but was held back a year because he is unable to talk. He has a carer who is with him all day, and a speech device which helps him communicate.

Reef and his sister Payten (6). PHOTO: Supplied Reef and his sister Payten (6). PHOTO: Supplied

“The school is amazing and before he started his principal sent out a memo to all the parents of the children who were in his class asking them to explain about Reef's illness to their children and also show them pictures of Reef so that they would readily accept him,” says Charmeon.

“The things that hurt me most of all are when children point and stare at Reef, scream because they are afraid of how he looks, pass nasty comments about him -- and I wish parents would take the time and trouble to teach their children that even though some children look different they would still love to be included and accepted and have friends like every other child.”

To make his life easier, Reef has also started using a wheelchair. “Reef is able to walk and occasionally run, but short distances. His wheelchair makes him more independent and able to take part in outings, trips to the mall and school activities.

PHOTO: Supplied PHOTO: Supplied

He suffers a lot of pain in his legs and as his ankles are frozen in place, he’s almost walking on the inside of his ankles.”

Reef moved to Cincinnati his parents, Ryan and Lydia, only recently. They previously lived in Los Angeles in California, where they emigrated to from South Africa almost six years ago to afford Reef the best treatment at the Children’s Hospital there.

PHOTO: Supplied PHOTO: Supplied

When Reef was diagnosed with a rare form of skin cancer in December 2014, they were advised to have him treated at the Cincinnati Children’s Hospital, where he’ll hopefully get top-notch care.

According to Charmeon, the skin cancer is a result of all the medication he’s had to take over the years. He uses a chemotherapy cream to spread on his head and face, which burns away the cancer, and it’s this that causes the sores on his head. Reef will probably have to be treated for cancer for the rest of his life.

“The family was shattered when Reef was diagnosed with this skin cancer. The family has lived with the fear of losing him for seven years.”

Read more: ‘We thank God every day for the miracle that is Reef’

The Carnesons have been through tough financial times since moving to America. According to Charmeon they are still reliant on funds from South Africa. Ryan earns the minimum wage as a baker and Lydia is unable to work because she has to care for Reef fulltime.

Siranne van Onselen of the Team Reef fundraising committee says they are in desperate need of funds because at present they have nothing in the kitty to cover July’s costs. They need to send R30 000 to the Carnesons every month, the equivalent of about $1900 – less than an average salary in America.

Read more: Baby Reef makes progress

“They are reliant on fundraising, and with the weak rand/dollar exchange rate it’s a nightmare,” Charmeon says.

For more information about Reef, visit the Facebook page 1,000 candles for Baby Reef – Official Group.

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