CHARGE syndrome left us isolated, then it opened a new world

When Thomas was diagnosed with CHARGE syndrome, his parents were plunged into an uncertain isolation. Mum, Caroline, remembers the incredible relief of finding Sense and a place for her family to belong.

We found out about Thomas’s condition when he was born. Our typical pregnancy suddenly changed, we had to watch as our baby was whisked away to intensive care.

Within a short space of time, we had all these diagnoses that related back to CHARGE syndrome. It’s a rare genetic condition and no two children will experience it the same way. For Thomas, he’s deaf and has sensory impairments, a heart condition and low muscle tone. Our heads were still spinning when we were discharged.

At that moment, we were on our own in an unknown world. All we had was a leaflet about childhood deafness and the promise that someone would be in touch.

We felt lost

The weeks were passing by and the promised call from the hospital never came. The joy of finally bringing our baby home slipped away as our uncertainty grew. Thomas’s dad and I were still overwhelmed with unanswered questions.

We were determined to give Thomas the best care we could, as we did with all our children. But we felt lost. We wanted to communicate with him – all parents chatter to their babies, but we felt silly doing it. It was really tough.

One day, we caught a Sense advert on the TV. I thought, “These are the people who’ll know how to help Thomas.”

The best thing anyone could have said

Just days after reaching out, a local specialist called us back with reassurances and an offer to come over. By this point, we really wanted help. Within the fortnight three Sense staff with experience of CHARGE were sitting on our sofa, meeting Thomas.

I was so surprised, so grateful, that they’d come in person. They were able to answer all our questions and spend proper time with us.

I felt like I’d been falling and was just now being caught. They told me they could help and how. This other world started opening up as they explained all the things Sense could do with our family to support Thomas.

I remember, one of the ladies started talking about “the other families” and I was like, “what do you mean, what other families?”

It hadn’t occurred to me that I’d be able to meet other families who had disabilities like Thomas’s. Sense explained that we would, and not only that, but we’d meet parents who were further along in their journey and who could really help us.

I think that’s the best thing anyone could have said to me at that moment. It was just such a relief. Sense gave us a place to belong.

Today, Thomas is thriving

From then on Sense has stayed close by. They gave us advice, guidance and a whole new network of support.

Because they kept such a close relationship with us, Sense knew where Thomas was at – his interests and pace of learning. They even worked with his school to make sure they knew Thomas and could give him the best chance of developing.

Sense have been a huge part of enabling Thomas to challenge every expectation made of him. From walking, to communicating with picture cards and becoming the happy little soul that he is today.