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| KZN family's hope lies in China |
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| Atrofia Muscular Espinal | |
| Jueves 30 de Octubre de 2008 20:29 | |
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There are no translations available. Source: IOL For six years Durban parents Jay and Malita Padayachee lived with the knowledge that there was no chance of curing their wheelchair-bound daughter, Nicole, who was born with spinal muscular atrophy. As a baby, Nicole appeared healthy, and crawled and walked holding on to furniture, but near her first birthday her creche minder told her Greenwood Park parents that she was not reaching the normal physical development milestones. On her second birthday Nicole was diagnosed with spinal muscular atrophy type 2, an incurable degenerative disease that strikes about one in 6 000 children. The disease is a genetic condition in which the motor neurons that control nerves begin dying owing to a lack of a protein produced by the genes. Slowly, the Padayachees have watched their daughter, who is now in grade 1, become weaker and weaker. Nicole cannot stand, walk or crawl any more, nor can she afford to get sick. She does not have the muscular strength to cough up phlegm. "SMA (spinal muscular atrophy) affects all muscles in her body, so it is not just her ability to walk that is affected but also to hold things tightly. Her reflexes are so slow that even if she knows she's falling, she cannot stop herself," said her father. "According to medical research, children born with SMA type 2 only survive until the age of about 25." The Padayachees have been given hope by Chinese company Beike Biotech, which has made a breakthrough with stem cell treatment for the condition. However, the treatment costs $32 000 (about R300 000) and the Padayachees will still have to pay for flights for Nicole, a caregiver, extra medication, meals and laundry. Padayachee said Beike Biotech had confirmed that Nicole would be accepted as a patient. "All we want is for Nicole to lead a normal life and play with other kids around her. "The treatment consists of eight stem cell infusions via the spinal cord and a lot of physiotherapy. We need to raise about R350 000 to cover all costs. No donation is too small," he said. Donations can be deposited in Standard Bank account Hope for Nicole, account number 201783843, branch code 043626. For more information telephone Sharla Naidoo at 082 434 6000 or email cryptonauto@ mweb.co.za, or visit Nicole's blog at http://nicole- padayache.mytinybaby.co.za.
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