Rory was born at 38 weeks by emergency section.
Following a traumatic delivery and resuscitation at birth, we started the scary journey of diagnosis, treatment and acceptance.
"When you prepare for parenthood, you think of first steps, first words, riding a bike, first day at school and a future full of exciting moments.
What you don't prepare for are MRI's, Lumbar Punctures, Tube Feeding, endless appointments with doctors, physios, OTs and a bleak future. We left the hospital with our special and very complex little boy and our joy at finally getting home to be a family was short lived when we realised how lonely this journey would be!
Months of bewilderment, anxiety and (to be honest) depression followed. Not being sure where to turn for advice, support and guidance wasn't fun. Then we discovered 'Charlie House' and the team. Suddenly we met people who knew where we were, what we needed and made us feel a lot less lonely.
Since then we have managed to provide a better life for Rory, finding the right support for him and us. We have made some amazing friends who are in our position so understand the challenges. We have done activities that we would never have dreamed possible with Rory and had the opportunity to go on trips which opened our eyes to the possibilities for families like ours.
We have accepted that the future for Rory is a short one, but Charlie House is helping us to create great memories which we will cherish forever."