Introducing Reef Donald James Carneson...
Reef is six years old, and is a cancer survivor. At the age of just five months, he was diagnosed with high risk infant ALL (acute lymphoblastic leukaemia). Aggressive chemotherapy during his first year did not result in remission being obtained and at the age of only eleven months he received a bone marrow transplant.
Over the next two years his condition fluctuated wildly, with countless stays in ICU, and his family was warned on many occasions to prepare themselves for the worst. However Reef has proved to be a real fighter, and has beaten the odds every time. Until recently he has been cancer-free, but his little body has not been left unharmed. He suffers from severe graft-versus-host disease (GVHD), which has affected almost all the organs in his body, and his physical development is way behind. At the age of three, he was unable to walk, could not speak, and was fed through a naso-gastric tube.
During 2011 his parents realised that he would not be able to get the intense rehabilitation treatment that he needed in South Africa. Children’s Hospital of Los Angeles agreed to accept Reef as a patient, and in October 2011 the family moved to the USA.
The improvement in his condition since he began treatment in the USA is nothing short of miraculous. He can now run around, eat some normal food (although his nutrition is still a problem), and has a vocabulary of over fifty words. A team of specialists controls and monitors his treatments, and he is flourishing while receiving the necessary therapies.
All of this has proved extremely costly, and until 2014 neither of his parents had been permitted to work in the USA due to their visa conditions. The family had been totally reliant on funds raised on their behalf (in most cases by total strangers), not only for Reef’s medical treatment, but also for their day-to-day living expenses.
After one year, their medical visa expired, and for this to be renewed would have involved Reef returning to South Africa to be reassessed. This was not a viable option, as not only is the cost prohibitive, but more importantly, the flights would be extremely dangerous for Reef as he has a severely compromised immune system. The only other option was for one of Reef’s parents to study a degree course, so his father Ryan embarked on an 18-month Cooking and Baking course at a college in LA. This was paid for initially by his family in South Africa, and then by generous benefactors from around the world. Despite all the worries about Reef, Ryan worked diligently and graduated top of his class in December 2013.
After completing his studies and graduating, Ryan was then permitted to work for a year to complete the practical side of his training. He found a job, but unfortunately, as a new recruit, his wages were low, and did not even cover their basic living expenses, let alone Reef’s treatments and medications. Last year, even with Ryan’s salary, there was a shortfall of around $2500, or R27000, every month.
At the end of 2014 the family was devastated to learn that cancer had once again crept into Reef’s little body. He has skin cancer on his scalp and face, which is being treated with topical chemotherapy cream. Fortunately due to his family’s vigilance it was caught at an early stage, but there is still a high risk of it spreading. During this treatment, he is no longer able to take the immunosuppressant drug for his GVHD, and there is a major concern that this could flare up again, with life-threatening consequences. If the initial treatment for skin cancer is unsuccessful, he may need skin grafts, which would present many complications.
With these new setbacks for Reef, Ryan now feels that he needs to be on hand to help Lydia during this traumatic time. He has decided that his family must come first, and resigned from his job to be with Lydia, Reef and Payten. He also needs to be available for meetings with doctors overseeing Reef’s treatment regime. This will obviously put even more pressure on their scarce resources, and friends in LA are working hard to find some ways to help.
Please browse through this site and experience with his parents some of the heartache they have endured. If you are able to help financially, even with a small amount, the family and one very special little boy will be eternally grateful.
Be warned: little Reef will creep into your heart!
Join us at Reef's Facebook Group for daily updates, photos and videos.
We also have a Facebook page called Raising for Reef
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