05/06/2024
I am Carmen Jacobs, mother of a boy with a rare illness called Duchenne muscular dystrophy. I have been in the travel industry since 2004, working as a corporate travel consultant for the last few years. In 2011, I gave birth to my son, Cellan.
He was born a healthy young boy, with no signs of any illness or disability. As he grew up I started having concerns about his health. Despite meeting some of his milestones later than expected, his pediatrician at the time dismissed my concerns by simply saying that each child is different and develops at their own pace.
At a family gathering in 2017, a family member who happened to be a doctor saw Cellan for the first time since he was little and immediately suggested we get a second opinion. The second pediatrician suspected Beckers / Duchenne and sent Cellan for some tests. In November 2017 his test results came back with a CK count of over +-1900, which confirmed that my son had Duchenne Muscular Dystrophy. It was one of my lowest moments, as any relief for finally having answers was quickly drowned out by the damning diagnosis. Duchenne Muscular Dystrophy is one of the most severe inherited muscular dystrophies and will lead to progressive muscle fiber degeneration. Essentially his muscles will slowly deteriorate until it becomes fatal. He was diagnosed at age six.
With steroid treatment and physiotherapy, we can only hope to delay the onset of the worst of his symptoms until he is in his twenties. Since his diagnosis, Cellan has been receiving his treatments at Red Cross children's hospital ( RXH165961 ) and sees a local Pediatrician in Paarl ( Dr Tonken) every few months. In April 2020 Cellan became non-ambulatory, which means he became unable to walk. He has been making use of a wheelchair ever since. This allows him some dignity and independence while the disease continues to rob him of his mobility.
Cellan currently attends Paarl School in Brackenfell and makes use of bus transport to travel to and from home. At school he has joined the choir, which helps create a sense of normality for him. He loves cars, gaming, history, exploring and going on adventures. For obvious reasons he does not partake in any sporting activities but would attend games or watch them just out of interest. My son is shy and often keeps to himself, but everyone observes that he is wise beyond his years. At home his true personality shines when he makes jokes and talks our ears off.
He currently has a 18" motorized wheelchair which he has unfortunately outgrown. While he is still physically growing in length, we are also struggling to keep his weight down due to his sedentary lifestyle, declining mental health and the effects of his chronic medication. According to his measurements, he now requires a 20" motorized chair estimated to cost around +- R70 000. Our medical aid will cover up to R7 000.00 estimated .
We are in the process of planning and hosting some fundraisers and food sales to assist with the outstanding costs for the wheelchair.
Another way to keep the costs down would be with a secondhand chair, but those are very hard to come by especially to find the correct size and proper seating for him. If you know of anyone who can assist with one, please let me know.
Besides the immediate urgent need for a new wheelchair, I am also having to cover the standard monthly fees that keep on increasing. This includes school fees, bus fees, adult nappies, pads, linen savers and his chronic medication since government hospitals no longer provide patients on medical aid with medication. On top of this I will also soon have to invest in a larger vehicle, like a van, that can be modified to be wheelchair accessible and fitted with a lift. His physical size prevents me from being able to lift him into a regular vehicle, which means he has been homebound more often than desired.
The additional costs of trying to manage my son's disease and provide him as much comfort as I can has placed an immense pressure on me and my family. I struggle to meet the fixed monthly costs and cannot afford any extras like the wheelchair, let alone a new mode of transport. I won't have as much time with my son as I always dreamt of, or assumed I would, but I would like to try my best to make his life as easy and comfortable as possible under the circumstances.
Any assistance you could provide would be greatly appreciated. Please see his measurements and recent pictures of Cellan below.
Kind regards,
Carmen Jacobs ( 073 080 3058 )
Monetary Donations: MR C N Jacobs Capitec Bank Savings Account Acc no - 1902529837
