Dylen Dhaver Spina Bifida Foundation NPC
Hydrocephalus and spina bifida are potentially life-threatening conditions affecting between one and three in every thousand infants born in most parts of the world, often leading to death and severe lifelong disabilities. Spina Bifida is a birth defect that occurs when a baby’s spine does not fully develop. As a result, the spinal cord and nerves that protrude out of it may be damaged or completely severed. The defect causes an opening in the spine which is visible or sometimes the defect remains hidden underneath the skin. Mild defects may cause few or no problems, while more severe defects can cause serious problems such as paralysis and the loss of bladder and bowel functions including hydrocephalus.
Hydrocephalus is a dangerous enlargement of the head from blockage of cerebral spinal fluid (CSF) circulation and can be prevented by early detection and the surgical insertion of a shunt. Risks are reduced by immediate surgery and careful management. Spina Bifida and Hydrocephalus co-exist 80% of the time and occurs even before a mother knows that she is pregnant.
Spina Bifida and Hydrocephalus are not given much support by both, society and the state healthcare systems. Even though medicine has advanced so vastly in this era, South African state hospitals are still lagging far behind when it comes to the treatment of these children. A tragedy, the loss of my son born with these disabilities is the driving force behind this foundation. The mission of the Dylen Dhaver Spina Bifida Foundation is to raise awareness and support children born with these disabilities that often go “unseen”.
The South African state hospitals are not equipped to handle the needs of these children, and with budget restraints and limited operating theatre time, these kids are forgotten. How do parents manage the care of these children if they have to travel between provinces for treatment? Only those fortunate enough to have medical aid or financial resources have access to state-of-the-art equipment and life-saving operations. Where do the rest of the children go and who makes the decision that one child’s life is more valuable than another’s?
Spina Bifida and hydrocephalus are not third world disabilities and we should not be treated is as such!
Meet our Warriors!
Asandiswa born on 26th May 2015 in Mpumulanga. Sanele, Asandiswa’s mum heard the word spina bifida for the first time when her daughter was born. Without any prior knowledge about Spina Bifida or what it is, Sanela took to the internet to find out more. Far away from her hometown Sanele stayed with Asandiswa in the hospital until her spine could be repaired which was only two months later. Five years later this beautiful child is still struggling to walk because her feet have become bowed causing her tremendous pain when she tries to walk. We are raising funds for Asandiswa and thanks to some of our donors, Asandiswa has started with her physiotherapy, however, she still has a long way to go and will eventually need orthopaedic shoes. Although Asandiswa is on the waiting list for orthopaedic shoes at a hospital in Ermelo which is more than 200km’s from where she lives, her appointment was cancelled due to Covid and she can only be seen next year! Once again, another child with Spina Bifida is forgotten. We need your help to get Asandiswa more physiotherapy sessions and her orthopaedic shoes so that this little warrior can walk tall without the fear of feeling pain.
Tia is a 12-year-old girl from Mitchell’s Plain in Cape Town. Tia is one of the few fortunate children born with Spina Bifida and able to walk, however, she has no control over her bowel and bladder and still wears nappies. Her mother has made a plea on social media requesting sponsors for nappies for this child. The Dylen Dhaver Spina Bifida Foundation assisted Tia by sponsoring her with nappies, but Tia will need more. She will continue to wear nappies well into adulthood. Help us to help Tia to live with the dignity that she deserves.