Ishrat Livingstone is 12 years old and wants nothing more than to attend high school next year. But the Vista Nova Primary pupil desperately needs a motorised wheelchair costing R52 000 to realise her dream.
Having been born with the rare disease Osteogenesis Imperfecta (OI), also known as brittle bones disease, she has faced considerable obstacles from birth. She has severe scoliosis as well as a pigeon (or barrel) chest, which causes her lungs to be compressed, making her breathe faster and subsequently tiring easily.
Her mother, Rageema Livingstone, said: "She has been completely wheelchair-bound for the past year as her bones have started to thin to the point where one can no longer distinguish between rod and bone in her left femur.
"Standing causes fractures and pain in her legs. She therefore requires assistance in going to the toilet and moving around outside her chair.
"Even though she is 12, she is very tiny and still fits into 6- to 7-year-old clothes. We have to take extra care and precautions in taking her anywhere as she also cannot travel for long periods as she has backache due to scoliosis.
"A lot of extra things are required to provide more comfort for her. However, we can only see to the basics as I am a stay-at-home mom due to her constantly being in hospital as companies do not understand the frequency of breaks as well as the extended recovery times."
Rageema added: "During my pregnancy my gynaecologist did not send me for abnormailty scans, even though he detected her femurs were shorter than normal.
"This resulted in her being born two weeks early via emergency C-section with broken bones as no extra care had been taken when handling her at birth. Both her femurs were fractured as well as her ribs, and her arm was dislocated.
"Soon after birth she was diagnosed with Osteogenesis Imperfecta and we were informed she would not make it out of the hospital due to the severity of the OI.
"Thankfully, an orthopaedic surgeon from the Red Cross arrived and had her transferred to the Red Cross Hospital, where she was rediagnosed with a less fatal type and has been under Red Cross care ever since.
"I have since started Brittle Bones SA (184-120), the only registered organisation for OI in SA. This year we have evolved into a national organisation with sections in Johannesburg and Durban, with the head office being in Cape Town.
"I have also co-founded OI Africa along with Tarela Aghanti, the founder of OI Nigeria, to try and assist other countries in building support groups and organisations for OI.
"To raise funds for her as well as other kids in need of mobility devices we are hosting fund-raisers in the form of a supper on 23 November at the Taronga Road Hall. Tickets cost R200
"I am also baking boxes of biscuits and selling OI bracelets to raise whatever funds we can. My organisation relies solely on the support of the community to enable us to provide a better quality of life to all that have this incurable condition."
The banking details to assist Ishrat are: FNB; Account name: Osteogenesis Imperfecta; Account number: 62750335468; branch code: 250655.
Source : IOL , 9 Nov 2018
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