We are holding a charity day at The Pheasant, Waterside, Chesham, on 16th July to raise money for Great Ormond Street Hospital Children’s Charity - Registered Charity No. 235825
There will be a bouncy castle, face-painting, BBQ and raffle from 12pm, and a disco from 8pm.
Amelia was born with Beckwith Wiedemann Syndrome (BWS) and Hyperinsulinism (HI).
BWS is a rare condition caused by a fault with her growth Chromosome. This means she is unable to control her growth in the same way as other children. The features of BWS that affect Amelia are:
HI is also a rare condition that causes Hypoglycemia, and is occasionally linked with BWS. This means that she produces too much insulin, causing her sugar levels to drop to below a safe level. Untreated Hypoglycemia can lead to seizures and coma. She had surgery on her pancreas when she was 11 weeks old to try and reduce the amount of insulin she was producing. This made a huge improvement, and now her sugar levels can be controlled by medication.
She was diagnosed shortly after she was born, and she spent 6 weeks in Lister SCBU before being transferred to Great Ormond Street Hospital, where she stayed for a further 7 weeks. When she was born, her sugar levels were the main issue. They were dangerously low, and it was very difficult to stabilise her. Once we moved to GOSH, we started to make progress and the care she received was amazing. After three long months, she was finally allowed to come home. We still test her blood sugars on a daily basis to ensure she remains safe. She continues to have regular appointments at GOSH and will do until she is an adult. Although she will always have the condition, the problems should settle down when she stops growing.
Since Amelia was born, we (along with family and friends) have been fundraising to raise money for Great Ormond Street Hospital charity. This year, Natalie Mahoney and Jonathan Eames are participating in the London Parks Half marathon on 9th October.
For further details, please call Natalie on 07967 608209 or Jane on 07788 591030