Two years on from the fundraiser detailed below our next fundraiser will be a band of colleagues abseiling down The Bridewell building in Bristol. Please show your support for these fearless colleagues by making a donation!
A brief update on Isla who turns 4 in July 2016 - she is such a happy, bubbly girl, she brings a smile to my face everyday. However she still does not walk although she has just started 'cruising' which is very exciting and gives us hope. She still doesn't talk and is fed via her tummy PEG and she is still undiagnosed. She is an inspiration to Luke, Oscar and I and we love her very much.
My wonderful daughter Isla was born in 2012 with unexpected life long complications. At her 12 week scan all was fine but at the 20 week we were told of some abnormalities. We were referred to a specialist who saw us several times and the abnormalities slowly improved however problems were found with her heart so we were referred to a heart consultant. This Dr saw us many times and explained that Isla's heart was the wrong shape. She however didn't think it was much to worry about.
On July 9th 2012 Isla was born - the same day and practically the same time as my grandmothers funeral. Isla's middle name is May in memory of her. Isla was born normally however immediately had problems breathing so was taken straight to NICU. I didn't get to hold her until 7 hours after she was born. Isla was a very sick little girl and spent her first 10 weeks of life on NICU at Southmead where they undoubtedly saved her life. Isla was born with the following conditions:
congenital hypotonia and weakness - floppy body
Weight faltering with NG feeds - tube down her nose
Gastroesophageal reflux - sick multiple times per day
Delayed motor milestones - she is considerably behind
Patent ductus arteriosus and patent formen ovale - heart valve not closed causing her heart to pump blood the wrong way round her body and into her lungs
Respiratory difficulties with laryngomalacia and tracheobronchomalacia - breathing difficulties
Isla has already had 3 operations in her short life; the heart valve has been closed, she has a tummy PEG and she most recently had major stomach surgery to fold her stomach over to stop her being sick. Isla is classed as having an 'undiagnosed genetic disorder' and we don't know what her future holds, we don't know if she will walk or talk but she brings us joy every day and along with Oscar that is what gets us through. We still have a long and uncertain road ahead, sometimes we just take it in our stride, other days it is all too much to bear.
All proceeds from the event will go to NICU so please give generously to this massively worthwhile cause. The work they do is amazing and we cant thank them enough.
We are holding this event at The Eastfield Inn, Henleaze Road on Saturday 27th September between 1.30-4.30pm. There will be stalls, fun and games, face painting and much more. The Lord Mayor of Bristol Alastair Watson will be opening the event and a very special Disney Princess will be joining us later it the day.
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