As mother of my 23-year-old daughter, Chené, I would like to give the following background on her life.
She was born on 8 August 1995 as I presumed, as a normal, healthy child. As she was my first borne, I was uneducated and had to learn about the upbringing of a child, even it comes naturally.
She went to a day-care centre from six months and at the age of ± 12 months my day-care mother phoned me one day and said to me that there is something wrong with my daughter’s development. It was slow and not on the stages it should be. I was resistant and thought how she would know, I am her mother and should know better. But after confederation we decided to do that, and took our daughter to a paediatric neurologist as well as ear specialist and audiologist who, after referring and evaluation, said that she is not developing normal and referred her to a brain surgeon. And this is where our journey started.
A sist was found on her left side of her cerebellum and she was diagnosed with microcephaly by Dr Michael Lippert form Pretoria, which is a abnormal smallness of the head, a condition associated with brain problems and which prevents her from brain development. He also claimed she is and will be moderately mentally retarded for the rest of her life.
A shunt was put in her brain to drain any fluids and just a few months after this procedure, more of less when she was 2 years old, Chené started developing severe epilepsy. This was due to the brain surgery and she was put on medicine for this lifelong condition which will not go away, because she has a brain injury.
The story is to long to explain everything from there on, and now she still gets epilepsy even though she is on medication. The condition is under control, but unfortunately the still gets breaks-throughs.
Because of all this she has low speech, cannot talk only 5-8 vocabulary, she has low muscle tones, bad co-ordination and perception, little understanding, cannot do anything for herself, low cognitive skills and she shows signs of autism.
I am looking after her full time for more than 10 years at home. She is not in a care-taking home. She is a angel from above and I love her dearly. She does not ask much, she is totally dependant of me her mother, or any near family member.
She communicates on her way, which I do understand, but unfortunately there are a few things I would love to have or give to her, to make life easier as her care-taker :-
With bath-time it is difficult to lift her out of the bath. She is built very tiny but it still is a strain on my back and for her as well to get out of the bath. A type of hoist will help me here.
I need a better bed for her. Like those hospital beds which have sides on the bed so that she cannot fall out, because even though she is disabled, she can move her lower body. She also has bruises on her legs and knees because she lies allot and some kind of cushioning will help.
She really needs dental care as she has not had this for more than 4 years. Her teeth need to be checked for decay and fixed. The last time she had tooth infection, her check and gums got swollen and then only we determined that she has infection. But that time the poor child probably had so much pain, and since she cannot speak or show pain, I felt terrible about this. I would really like to avoid that by taking her to a dentist, but she must be sedated, or anaesthetics given to her to make her sleep because this will upset her, and she will not lie still if not sedated.
I need her to get therapy like occupational and/or physiotherapy to help her muscles get stronger and help her with co-ordination and small/gross motor skills and maybe if possible, some horse-riding to assist.
Lastly, I need a decent wheelchair not ordinary one. Specially one for specifically her needs that would meet her disability.
food processor for use to prepare her food as she does not eat normal food, only fine food. She also only eats certain foods and her porridges only consist of certain foods like Pronutro and Future Life as this is the only porridges which gives her the necessary vitamins and minerals. These a quite expensive foods more than for example plain mealie meel porridge.
Thank you for your time in this regard.
I hope that by my letter, I can make it easier for my daughter and can I help her to have a full life up to her capacity.