Reef is 12 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. 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.
The family’s visa’s have been extended, with work permits for both Ryan and Lydia, but as I’m sure you are aware, in today’s economy (especially with COVID-19 and the consequential shutdowns), times are tough and Lydia does need to be on hand to see to Reef, Payten and Kenzi.
After almost five years of virtual isolation, Reef was allowed to start school in March 2016 –a dream that his parents never thought would come true. He attended Symmes Elementary School, and was 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 was 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 was overwhelming, and Reef loves all the interaction.
In 2018, the family moved to Mason, Cincinnati, which is in a different school district to Symmes Elementary and Reef and Payten now attend Mason elementary. They are both very happy there and their teachers are lovely and very supportive.
Reef has severe pronation of his feet and is 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 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.
In January 2016, 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.
Reef is currently facing an enormous battle as unfortunately the squamous cell carcinoma on his head and face has progressed rapidly. After some lesions on his head were just not getting better, a punch biopsy was performed and the family’s worst fears were recognized. It had spread into his skull and the dura of his brain, which is the outer brain tissue layer. A myriad of aggressive surgeries were been planned to tackle this new threat head on. Reef underwent massive surgery on Monday the 31st of August 2020 to remove parts of his cancer riddled skull and dura layer of his brain that had also been eaten away from the cancer. Currently the family are awaiting the pathology results to see if there are clear margins, and if there are, they will proceed to the next stage of surgery to remove a muscle from his back to cover the whole in his head. Please pray for Reef through this awful and uncertain time. He is so brave and the day after surgery was already in good spirit’s and walking around, but this is a very tough road for anyone to follow, let alone a child who has already been through so much.
Please follow the latest surgery and other updates on www.facebook.com/Rockit4Reef and also https://www.facebook.com/groups/SaveBabyReefOfficial/
If you are able to help financially, even with a small amount, the family and one very special little boy will be eternally grateful. Paypal donations can be sent to firstname.lastname@example.org and his South African bank account details can be found at www.savebabyreef.com/donate.
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
Bank Account donations and stop orders in RSA:
Account Name: CA WARREN
Bank : Standard Bank
Branch Code: 051001
Account number : 10-07-653-858-1
PLEASE USE "REEF" AND YOUR NAME AS RECIPIENT REFERENCE
Swift Code : SBZAZAJJ(For International Donations)