Ruan was born on 28 September 2011 and was diagnosed with Langerhans Cell Histiocytosis (LCH) in June 2012. He received his first chemotherapy treatment when he was only nine months old. We are very blessed to have celebrated our only child’s 4th birthday on 28 September 2015.
Ruan’s symptoms started presenting as severe scalp rashes, chronic ear infections, groin rashes, and as reddish-brown pinhead spots on his body. His condition/illness has rapidly progressed to his central nervous system and skeleton, where it has formed a tumor.
LCH is an auto-immune disease like cancer which can cause tumors and may damage organs. It affects approximately 200 000 children worldwide. Langerhans cells are a type of white blood cell whose function in the body is the control of infection. In LCH, too many Langerhans cells are produced and accumulate in non-specific areas resulting in the formation of tumors and organ damage.
Our experience with LCH is that it is a chameleon disease and is often misdiagnosed, at least a couple of times, before the correct questions are asked. The nature of the disease is one of uncertainty, as it is often very mild but can also be fatal. It could enter into spontaneous remission, but can easily recur, during treatment. The period of the treatment program cannot be guaranteed, thus resulting in changing protocols approximately every six months.
Despite three years of chemotherapy, with intermittent radiation treatments, Ruan has never been able to reach a sustained remission. In his doctor’s words, Ruan’s immune system has to be “rebooted”, and this can only be done by means of a stem-cell transplant, a procedure recommended for him as early 2016. Without a “rebooted” immune system, his condition is considered fatal.
Taking into account doctor’s fees, as well as the fact that he will be hospitaized for another 6 weeks, the latest quotation for the procedure amount to R1,566 951.91. Although we are grateful for having a medical aid, this will not cover the whole procedure. We will have to raise an additional R500 000 to cover all expenses.
In spite of Ruan’s illness, he is a very happy young boy with a wonderful disposition. He loves playing with friends and family members, swimming and watching cartoons.
We are appealing to everyone for a donation or who might know of someone who is in the financial position to contribute towards Ruan’s stem-cell transplant. Any financial contribution, no matter how small, will be greatly appreciated.