Jack was born with Nager Syndrome, a genetic mutation which affects the development of his face and limbs; he has no cheekbones, a cleft palate and a very underdeveloped lower jaw, his arms are fused and shorter than average, and he has no thumbs. Despite a positive prognosis meaning Jack will likely live a long life, he has had to face a lot of challenges that other children his age can’t relate to, and his condition causes a lot of side effects.
For example, Jack had to have a tracheostomy fitted almost as soon as he was born – a tube in his throat which facilitates the flow of oxygen – as the lack of support in his facial structure makes it very difficult for him to breathe. That was hard to come to terms with, as we only heard him cry a few times before it was fitted, and once it was done he didn’t have that ability anymore; it was like his voice had been taken away. We have now successfully got Jack started with a speech valve, but it’s been a long time coming and you can’t imagine how difficult it is to go that long without hearing your little one’s voice.
Jack is two years old now, and he’s begun having elective surgeries to hopefully turn one finger on each hand into thumbs for him to use. Although they are for his benefit in the long run, these surgeries lead to long recovery times and a lack of freedom – after his first surgery his hands were in casts for about 4 weeks. It’s a lot for such a little man to handle. We were beginning to worry about his development as he wasn’t interested in walking at all, and he only used British Sign Language when he really had to.
When we joined Demelza’s Little Dots group, things really turned a corner for Jack. During his weekly sessions, which are very similar to your average play group but catered for children with complex conditions, Jack quickly started walking as he wanted to get involved in all the activities that were on offer. He’s even trying to run now, as walking obviously isn’t quick enough! He’s also started using BSL a lot more to communicate, which not only lets him tell us what he needs, it also lets him share with people outside of the family – which is great for his socialisation.
He’s also surprisingly very into messy play now, and makes a beeline for the messy play table at Little Dots whenever he can; he used to have no interest at all in activities like that, so seeing these developments is a huge relief. He’s only been attending the Little Dots sessions for about six months, but the changes in his personality and the confidence he’s gained are as clear as day. He’s happy now to play by himself, or to seek out others to play with, and he leaves the group full of energy, giving ‘high-fours’ to all the healthcare assistants on his way out.
For us as parents, Little Dots represents a chance to feel a bit ‘normal’. Every other parent there knows to some degree what you’re going through; rare conditions aren’t that rare at Demelza, they’re often the norm. That shared understanding makes it much easier to relate to other parents, and to make friends – you’re often seeing the same faces every week, and we’ve already made a few friends who we now see outside of Little Dots. It means a lot that after the isolation of COVID-19 and the constant worry of hospital appointments and surgeries, that we can finally settle into a pattern and do something that benefits all of us. We’re really grateful to Demelza for making that happen.”
Jack’s mum and dad, Hannah and Josh
Little Dots runs in Dover, East Sussex, and Sittingbourne for all ages; it also runs in Tunbridge Wells for children under five. If you’re a current Demelza service user and you’d like to attend a Little Dots session in your area, please get in touch by emailing email@example.com