It has been a while since we have shared an update on our children’s health. Their health has been stable with no major changes …. well ’til last week that was …..

Last Monday evening, 29th April at 18.42pm, Annabelle fell to the ground and had her first Tonic Clonic seizure. Despite everything that I had read and been guided to remain calm, I screamed and panicked. Luckily, Andy came home and leapt into action. It was the scariest thing I had ever seen, Annabelle did not look like Annabelle. She went grey. She made hideous noises and her body was so tight. Young Georgie witnessed the event and was scared by the situation but once everything had calmed down and Annabelle went into recovery we were able to comfort her. We called the paramedics who came and checked her over and were happy with her speedy recovery.

The next day phone calls and emails were made to make Annabelle’s consultants aware of the situation. Annabelle now has a seizure protocol in place and has started medication. She has returned back to her normal self and has not had any more seizures since. We are hoping this will be the case for quite some time.

Let’s update you on our cheeky Robbie …. we noticed last October that he was struggling with his eyesight so had his consultant authorise our local optician to prescribe glasses for him. The optician advised that the glasses have a weak prescription but they will sharpen up the vision he has. Just before Christmas we noticed he was cautious of where he walked and becoming more clumsy. The school had also noticed that he was struggling to read the board, pulling things closer to him and they had also noticed him bumping into things.

We knew that his eyes had deteriorated, but by how much we had no idea. We had a hospital appointment last Tuesday, that confirmed our suspicions but it also surprised us and his consultant. Robbie’s eyesight has deteriorated to a level where he is now registered severely visually impaired (blind). He has received this registration two years ahead of when Annabelle received her registration. This is just one example of the rate that his eyes have changed,  last December Robbie was able to play crazy golf with no problem, but when we went in April he struggled, it broke our hearts watching him trying to play the game he loves.

The beginning part of last week was just a kick in the teeth, and we struggled with the heartache knowing that Battens is taking our children. This week, however, we have been busy planning fundraising events and ways that we an raise awareness. Please keep following our cause and let us know if there is a way that you can help.