On the 31st July 2017, we were faced with the news that out little man had epilepsy... unaware of how this can alter a life, we spent a little while between wards and hospitals, nurses, doctors and consultants, trying to come to terms with what the future held for us.

Through time it became apparent that there were some developmental delays, not quite up to speed with his peers, but with Jacks epileptic activity considered ”chaotic”, I’m not sure how the rascal was supposed to be taking the big bad world in at the same time and so we reached across every avenue to help guide him along the rocky road.

We have been humbled to date at how helpful the NHS have been, how much they have done for us, whether its answering unanswered questions, the abundence of advice and support they have offered us. We have been so lucky to be able to access great pieces of equipment, but as we all know, funding within the NHS only stretches so far, and that is why we are on our quest to raise as much money as possible to collate some more “fun“ equipment, by FireFly Friends.

These include pieces such as the GoTo seat ( a seat which allows children like Jack with low tone to join in ordinary activities such as riding in the shopping trolley), the Splashy seat, a seat allowing kids to bath as close to a normal bath. The Upsee, to help kids experience the walking sensation for kids who may not ever walk unaided.

We really are so grateful for all our family and friends and the support they have offered us to date! We hope you can all share a Scone and Tea with us on the 18th August so you can see how much you all mean to us!!

Lots of love,

The Henry Crew

xoxox