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Meet Asandiswa

Meet Asandiswa

Personal message

Asandiswa was born on the 26th of May 2015. She was born with Spina Bifida and Hydrocephalus. Sanele, Asandiswa’s mother residing in Mpumalanga, was transferred to a hospital in Witbank for the birth because according to the medical staff at the hospital in her residential zone, they could not perform the C-section since Asandiswa was a breech baby. Sanele heard the word Spina Bifida for the first time when her daughter was born. Without any prior knowledge of the condition, Sanele searched for this condition on the internet and some of the information was very daunting to her. Far away from her
home town Sanele had to stay with Asandiswa at the hospital until she had the surgery to repair the opening in her spine. Medical staff were not very helpful
in explaining what the condition was, so Sanele was left to hope and pray.
Asandiswa stayed in the hospital for a month before she could have the surgery to close up her spine because the hospital did not have operating theatre time
and a neuro-surgeon to perform the surgery. Under normal circumstances, a spina bifida baby’s spine has to be surgically repaired within 10 days after birth
to prevent infection and further complications, but due to the lack of resources at the State hospital, she had to wait. Asandiswa and her mum spent 2 months in hospital after the operation before they could go home.

5 years later this determined little girl thrived and against all odds started to crawl on her behind and eventually tried to stand with the aid of crutches. According to her mum doctors have informed her that she should not worry about the hydrocephalus because its growth is slow. Although Asandiswa has tried her utmost to be an independent child, walking has become a painful experience for her so she cries and does not want to use the crutches. Asandiswa is on the waiting list for orthopaedic shoes but she and her mum have to travel to Ermelo for the shoes. As Asandiswa grew, her feet became bowed, a common trait with Spina Bifida and without physiotherapy for 5 years
her Achilles's tendons have become severed causing tremendous pain when she tries to walk. Another factor is her hips; spina bifida children’s hips can get dislocated over time due to the muscle imbalance around the hips.
Sanele is not aware of all the medical complications that her daughter
will experience as she grows up and without the necessary support of a team of medical experts such as paediatricians, pediatric neurosurgeons, physiotherapists and pediatric orthopedic surgeons, Asandiswa will not be able to grow and live to her full potential.

We want to help Asandiswa to overcome the fear of walking. This fear developed due to the pain she endures every day whilst trying to walk
with the crutches. We want her to walk tall and to continue being the Spina Bifida warrior that she is.

Help us help Asandiswa

Asandiswa needs a consultation with a pediatrician in her region to monitor her progress and to provide medical expertise when needed.

A pediatric neuro-surgeon needs to be consulted urgently to monitor the growth of the hydrocephalus because at birth a “shunt” was not inserted to drain the excess cerebral fluid from her brain, and if not treated soon, can be fatal.

Asandiswa needs to consult with a pediatric orthopaedic surgeon to determine the severity of the damage to her achilles tendons and her hips. She will need surgery to repair this.

Regular physiotherapy sessions are required to help develop the muscles in her legs and to prevent the feet from becoming bowed again.

Lastly but very importantly, Asandiswe needs orthopaedic shoes to assist her to walk pain-free.

Donations

  • Oct 21, 2020 - R 500.00
  • "N/A" - Kavashni

  • Oct 21, 2020 - R 100.00
  • "A well deserved cause" - Vick Dhaver

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Statistics

Donations to date

R 600.00

Fundraising target

R 250 000.00
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Dylen Dhaver Spina Bifida Foundation NPC

Dylen Dhaver Spina Bifida Foundation NPC Logo

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.