Grace Shadrach was born on the 13th of June 2012, 34 weeks into the pregnancy as an emergency C-section due to complications. She weighed 4kg at birth and there was no problems or anticipated health concerns in the pregnancy according to the Obstetrician, but after delivery the Paediatrician had come in to discuss Grace`s condition.
Having a baby is such a beautiful experience but nothing prepared mom and dad, Susan and Eugene, for the road ahead..
They were told that her feet were deformed, a type of clubbed foot, and that she also had anal-malformation. That was a lot to handle but as days went on they found more and more problems like Sacral Agenesis – the most painful issue to deal with. Part of her spine was “missing” as it did not develop; she will never ever walk and will be in a wheelchair for the rest of her life.
She had been seen by numerous Specialists who could not do much. She was discharged after a month or so and went through to Durban to see a different Paediatrician. He had noticed that Grace had a problem with her eyesight and after testing found she had bilateral cataracts. She was referred to Specialists who could not do anything and referred her to another Specialist who surgically removed them. She was also referred to another Paediatric Ophthalmologist for glasses that had to be especially made for her overseas.
Susan was told by one of the Drs to make the decision of choosing whether to go back to work or not, and that Grace needed her undivided attention. She decided to resign in order to be there for little Grace. Consequently things are difficult financially because there is now one less salary.
Eventually their money had finished and Medical Aid had to fall away. All of the Specialists did scans and MRIs, blood tests and consultations, but nothing to repair the problems with her feet or bowel problems. Eventually after all the testing they found she had 3 kidneys with persistent bladder infections as well as a micro-colon with chronic constipation or severe diarrhea.
It has been a challenge to say the least. From Febrile convulsions, hospital admissions to high bowel washouts every other day. Grace is 7 going on 8 and still in nappies and that alone is a struggle. She has incontinence and toilet training has not worked so nappies, wetwipes, linen savers, nappy rash creams alone have become a costly affair as well as her Nutritional supplement, Pediasure.
With prayers from her parents, families and friends, Grace has defied Drs reports and started to walk on her own with no help at all – and she has never used a wheelchair. She has such an incredible mind and is so intelligent but what is sad is that there are no schools in Empangeni that are willing to take her because she is still in a nappy.
Any help would be welcomed, especially with her nappies and Pediasure. Surgeries that she still needs would be to repair her feet as well as repairing the anal malformation. She needs to be seen by a Ophthalmologist again to assess if she still needs glasses and ocular lenses.
You can help to raise funds for little Grace`s medical care and expenses by supporting our bracelet initiative. Together we can give her a chance at a better quality life and a brighter future!
Alternatively, please consider a donation; any and all donations welcome. REF: Grace Shadrach.
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