Reef is ten 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, albeit for short distances only, 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 R30000, 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 was treated initially with topical chemotherapy cream. The application of this cream was extremely painful for him, and his head became covered in sores and scabs.
His size and weight have always been a problem, and he was becoming more listless, and reluctant to eat. Children’s Hospital in Los Angeles, where he had been receiving treatment for three years, suggested early last year that his parents should seek a second opinion, and they recommended Cincinnati Children’s Hospital in Ohio – over 3,500km away. Ryan and Lydia spoke to the head of oncology there, and were very encouraged by her enthusiasm and conviction that the team of doctors there would be able to help Reef.
The next hurdle was how to get Reef to Cincinnati, as he would be unable to take a commercial flight due to the risk of picking up an infection. It was around this time that a group of ladies in LA, who run an organization called Good Deeds in Motion, heard of Reef’s plight, and used their contacts to get some publicity for the family and Reef’s needs. First came a post on Ellen Degeneres’ facebook page, then as a result of this, Angie Crouch, a news reporter with Channel 4 in LA, became involved. Reef’s story appeared in a news insert, highlighting the fact that their visa was due to expire and the family risked deportation. This brought an outcry from the American public- and some very welcome donations in conjunction with The Oscar Litwak Foundation.
Reef’s television exposure was not over, and Ryan and Lydia were invited to appear on an episode of The Doctors. On a Skype link to Reef (at home with his grandparents) the audience let out a collective “aaaaah” when Reef clearly said “Lub you Dada” to Ryan in the studio! The producers of Grey’s Anatomy are considering dedicating an episode to the problems of graft versus host disease, to increase awareness of the problems experienced by children like Reef.
The generous donations after the television appearances provided the funding to get the family to Cincinnati for Reef’s evaluation, and a charity organization flew Reef, Payten and Lydia in a small plane –a five hour flight which was exciting (and stressful!) for Lydia and the children. WLW7 5 news network in Cincinnati also picked up on the story and ran a feature on Reef’s arrival.
The comprehensive treatment plan that was proposed for Reef in Cincinnati gave them great encouragement, and they made the decision to relocate to Cincinnati in February last year. Reef receives treatments from a range of specialists, who work together to ensure the optimum care and rehabilitation for him.
Wonderful news received last year is that the family’s visa has been extended for another two years, with work permits for both Ryan and Lydia. This takes them to February 2017, and after that the future is uncertain.
After almost five years of virtual isolation, Reef was allowed to start school in March last year –a dream that his parents never thought would come true. He attends Symmes Elementary School, and is in a small mainstream kindergarten class, with an aide constantly at his side. He loves school, and always tries his best, but due to his lack of speech he does find it difficult to cope with many of the activities. He wears a hearing aid and is being taught to use a speech machine to make his “voice” heard. The school principal is very supportive, and sent out letters to the parents of the children in his class ahead of time, so that they would be prepared for his “different” appearance and small stature. The love shown by both staff and pupils has been overwhelming, and Reef clearly loves all the interaction.
He has severe pronation of his feet, and is almost almost walking on his ankle on one side. The toes on his feet are also growing abnormally in his effort to balance while walking, and it is now impossible for him to walk long distances. Thanks to a huge fundraising effort by Kids First sports centre in Cincinnati, Reef has recently received a custom-built power wheelchair, which has made a tremendous difference to his quality of life. This will help prevent further damage to his legs, and enables him to move easily on outings.
Earlier this year, after a difficult (and unexpected!) pregnancy, little Kenzi was welcomed into the family, and Reef has matured in leaps and bounds with his new "big brother" responsibility. It is a delight to see the love he clearly has for this happy little soul.
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!
Introducing Reef Donald James Carneson...
You can make a donation from anywhere in the world via Paypal
Ryan's direct Paypal Address is firstname.lastname@example.org
Reef’s Trust fund in RSA:
Account Name : RDJ Carneson
Bank : Standard Bank
Branch : Northcliff
Branch Code : 006305
Account number : 008417059
Swift Code : SBZAZAJJ
(For International Donations)
Donate once off by SMS by smsing "Reef" to 38771 at a cost of R10!
Subscribe for R20 per month - SMS "Reef" to 31222 and follow the sms prompts
You can also donate via GoFundMe