Catching up with Reef Carneson.
Reef Carneson is a little boy who has been fighting cancer since the age of 5 months. Reef and his family moved to Los Angeles, where his treatment has been progressing well. Reef can walk and run now, speak 15 words and is still fighting. The family's medical visa ran out after a year. Reef's dad Ryan enrolled for a 18-month course in Cooking and Baking. He can now work and earns a small salary, but Reef's medical expenses are still way above what they can afford.
At the age of just five months, Reef Carneson 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. He was the youngest bone marrow recipient in South Africa at the time.
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. He is now 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 fifteen words. A team of specialists controls and monitors his treatments, and he is flourishing while receiving the necessary therapies. He is also slightly hearing impaired as a result of all the seizures and partial brain damage suffered during chemo and radiation and we are working on getting him a hearing aid.
All of this has proved extremely costly, and his parents were unable to work in the USA due to their visa conditions. The family has 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 a generous benefactor in the USA and then through donations to enable him to finish. Ryan graduated with honours in December 2013!
As part of his degree, Ryan is now allowed to work legally for one year in the USA. He has found a job, and he is earning a small salary but it is not enough to sustain them with Reef's therapies and medications on top of rent, utilities, groceries and fuel.
Reef's family hopes to be able to keep him in the USA where he can keep being treated and are doing everything they can to make this happen.
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