Sophie spent the first 3weeks of her life in the Neonatal Intensive Care Unit (NICU) at Derriford Hospital, Plymouth and the rest of her life in the Paediatric Intensive Care Unit (PICU) at Bristol Children's Hospital. We were a day away from being discharged home when she passed away.
Sophie passed away from a twisted bowel and sepsis, which both occurred at the same time and she went into cardiac arrest. This was unrelated to the genetic condition Sophie was born with. After testing 23,000 of Sophie's active genes, she was diagnosed with a rare condition where the calcium receptor in her placenta wasn't allowing calcium through during pregnancy. This restricted her bone growth and mineralisation, which meant she was born with a small ribcage and small lungs. The effected gene is the TRPV6, this is currently an unrecognised condition in the UK as Sophie was the first known case in the UK and 7th worldwide! We want to bring awareness to the condition and the first signs of this was in my 20week pregnancy scan.
At 10weeks old Sophie had a tracheostomy to allow her to be moved from the hospital ventilator to a home ventilator. From this day we were able to see her whole face, which was beautiful.
Our aim is to raise £10,000 for charities that helped Sophie and us, during her care and since she passed. We would like to help NICU Derriford, Plymouth & the Keep Me Close Appeal, Little Things & Co. Plymouth, Ronald McDonald Bristol and The Grand Appeal, Bristol.
We will aim to do various events to raise money for these charities. We are unable to spend our time with Sophie, but we can use our 'Sophie time' to help other families that are going through a similar time in their lives with their children or sadly without.
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- Daryl Patchitt
- Sarah Roden
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