Ambi-Bambi is severely disabled, having cerebral palsy and cortical blindness. She will most likely be fully dependant the rest of her life but she is also our beautiful daughter who has enlightened our lives. Not to mention, the years gone by have been endlessy educating.

The idea behind this website is to centralise as many helpful resources as possible to assist parents in a similar situation as well as tell Amber’s little story. One of the biggest challenges for us has been obtaining relevant information in respect of equipment, institutions and therapies.

In 1995 Amber Chelle was born into the big world. Strong and healthy, having achieved a score of 9 out of 10 on the APGAR test, Amber appeared to be just like all other babies. Not to mention, she was blessed with an enormous lung capacity and vocals that could wake the dead! At this early stage there was one quirk, this being the manner in which Amber favoured keeping her arms up, with hands by her ears whereas the other babies relaxed their arms by their side. Looking back, we realise that this was a result of spasticity.

Having taken Amber to the local clinic for her regular check ups, we were very much aware of the expected development pattern of babies and grew concerned around 8 weeks as she was not yet focussing on anything visually. Having to allow a child to develop at an individual pace, we were advised to wait a few more weeks. Weeks passed and the situation had not improved. At this point the clinic referred us to Addington Hospital where numerous tests were conducted and few pertained to the eyesight issue. Fortunately we were dealing with a paediatrician who was also a specialist in neurology. After obtaining the catscan results, Amber was diagnosed with SCHIZENCEPHALY, resulting in CORTICAL BLINDNESS and severe CEREBRAL PALSY. The x-rays from the catscan had revealed how parts of the brain in both hemispheres had not fully developed.

The cause of this is still undetermined but we were advised that this had occurred in the earliest developmental stages of the foetus. As there is no traceable history of neurological disorders on either side of our families, we feel that it may be a precautionary measure to go for a DNA test before considering having other children.

The 1st year was emotionally draining and Amber cried frequently. This appeared to be due to frustration and she was prescribed a mild sedative for a short period. Amber has always had a voracious appetite and an excellent sucking reflex so there were no problems there.

At the age of 6 months Amber started attending a crèche at the Natal Society for the Blind as they had facilities for children up to the age of 6 years old. The caregivers had been trained to provide different therapies and stimulation to disabled and blind children, training the other available senses to perform better. As Amber's needs became more apparent in her physical disabilities rather than her blindness, we located another school that catered for children with cerebral palsy called C.W.A.C. (Children with a Challenge). This was advertised in a local publication and is run by the KWA ZULU NATAL CEREBRAL PALSY ASSOCIATION (KZNCPA) . Amber has been attending C.W.A.C. since 1996 and absolutely loves it and adores the company of the other children and caregivers.

Amber experienced her 1st seizure shortly after her 2nd birthday and this was traumatic as we had not been prepared for this and had no clue of what was happening. This was due to a rather high temperature due to tonsillitis. She experienced the petite mal seizures, which can be unnoticeable to the inexperienced until left for too long. Although not diagnosed with epilepsy, we had her on chronic medication as a preventative measure. We learnt later that administering a small dose of valium rectally could prevent a trip to the hospital in most cases. Amber only experienced seizures when she had high temperatures. She has not been on her medication for epilepsy for the past 2 years and is doing fine.

During Amber’s time at C.W.A.C., we have bought her a standing frame, splints for her feet, moulded chairs and at one stage, we outsourced a physiotherapist to work that body. We were advised that the sooner therapy is started, the better. The standing frame (we bought ours from CHESHIRE HOMES), used for weight-bearing exercises, can be beneficial for the smaller child, their body weight is not too great. The splints are also great for soft, supple feet as this helps keep them bent at a 90 degree angle and can be used in conjunction with the standing frame for the weight-bearing exercises. Moulded chairs are absolutely essential for firm trunk control and can be used as car chairs and inserts for wheelchairs. The splints and moulded chairs can be obtained from WENTWORTH HOSPITAL’S orthopaedic department at a more affordable rate than private institutions. Contact - (031) 4605336.

NB. First check with your physiotherapist or specialist to see if these options are suitable for your children. This information is based on our personal experiences and should not replace professional advice from a qualified person.

About 5 years ago we gave HYPERBARIC OXYGEN THERAPY a bash. Unfortunately we could only afford 2 sets consisting of 20 sessions each, an hour at a time. On the documentary we viewed, the kids had gone for as many as 180 sessions to achieve noticeable results. There was a slight improvement after the 1st 20 sessions but we were a little disappointed after the 2nd lot. Given the opportunity, we would definitely give it another chance. Amber was first referred to a paediatrician for a check-up before she was allowed to have the treatment. Amber attended a local centre in Marianhill - contact number (031) 7005917.

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