Bertie’s first IronMan legend is Russell Wright!
Courage is a heart word. We have a very special Team Bertie event taking place this year. Russell Wright is Bertie’s very own IRONMAN! It is very overwhelming for us. If you don’t know what this involves, watch this video: This July Russell will undertake the gruelling 2.4 mile swim [that’s 152 lengths of a […]
Continue reading“What is wrong with Bertie?” Rare Disease Day, 2017
We are often asked to explain Bertie’s condition. This is tough because it is complicated. However, as it is Rare Disease Day, here goes: One of Bertie’s genes is faulty, specifically a collagen VI gene. In his case he didn’t inherit a faulty gene, although you can. It just went askew and created an error […]
Continue readingLife is better off-road!
We do everything we can to give Bertie a great childhood that is full of adventure but there is no avoiding that it is getting MUCH harder in his regular NHS chair as he grows heavier. The Ottobock is a fantastic chair and we love it but it is heavy and like most regular wheelchairs […]
Continue reading200 miles
Update: Vinny has done it! He set off at 5:30 am and finally made home at 2:14am the next morning. Vinny you are awesome. He (and his wife Louisa) raised £450! for Muscular Dystrophy UK. Thank you. Original post: This weekend (or next if the weather report is too poor for safe cycling), family […]
Continue readingBertie’s Trike Appeal
Update!!! We have done it! We have raised enough not just for the basic trike but for the full trailer trike. We are so grateful to you all. You’ve all made a little boy very happy! xxx Dear all, Following so many supporting comments and offers of help over the weekend, […]
Continue reading