Born: | 2009 |
Illness: | Undiagnosed neuro motor disorder, seizures, global development delay, retinal dystrophy, central hyotonia, dysphagia, low bp
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Theme: Balloons and Male Disney characters
Quilt delivered: 14th Jun 2014 |
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BiographyMatty was born on 4 Feb 2009, at first we did not know anything was wrong except that he had a club foot, which was plaster casted and treated over a series of weeks. However within a couple of weeks we realised Matty was having problems feeding and swallowing and his development was delayed, this is when a series of tests and investigations started ranging from mris, eegs, lumbur punctures, skin and muscle biopsies, and these investigations have continued up until this day. As yet we still do not have a diagnosis and we are 4 (nearly 5) years on now. Matty had a very hard year last year as he spent much of the year in hospital, he suffered an ischemic bowel and septic shock, he was admitted to ICU in Southampton and spent many months after recovering in hospital. He had 4 major bowel surgeries last year to include a large resection of bowel, hernia repair, multiple adhesions and a bowel blockage and 2 ischemic attacks which resulted in bowel being removed. He also suffered from pneumonia last year. Matty is fed via a gastrostomy and requires oxygen at night. Matty is wheelchair bound and is unable to communicate. He is a very happy little boy and enjoys life with his family, he loves his big Brother. We don't know what the future holds but we live life to the full and have as much fun as we can. Matty is now on a genetics study in the hope of finding a diagnosis one day.
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