Cara is nearly five years old and has attended Playskill since she was two. She has a rare disorder called CDG, which means there is an error in the way that sugars attach to proteins in her metabolic system. This leads to gross and fine motor skill, and speech & language disorders. There are around 10,000 people diagnosed with CDG worldwide, and although research moving forward at pace, there is no cure.

“Cara was diagnosed at 13 months, after we started noticing a range of issues, particularly with her gross motor skills, at 6 months. It was like living in a bad dream – like all parents in this situation, we were initially in state of shock and disbelief. We also had a ten-year-old child who was old enough to be aware of all the complex emotions and, with all the attention on their new sister, it was very difficult time.

We threw ourselves in to working out what support we could find, and where from. We didn’t know what would be best for Cara so we just learned as much as we could about what was out there.

Playskill was mentioned pretty early on, by a speech and language therapist we spoke to on the phone. It’s a really supportive collective of expert practitioners who really know what they’re doing and who blow me away with their determination to support children with additional needs. We were particularly lucky to have Playskill’s support via Zoom during Covid, when all other services shut down. Once the face to face sessions re-opened, meeting and chatting to other parents and professionals was invaluable. We get anecdotal expertise and a chance to exchange advice, tips and contacts.

The therapists have always understood Cara, taking the time to tailor to her needs. Being flexible if she’s felt upset, clingy, or has difficulty communicating. Their perseverance has paid off and it’s heartwarming to see her development.

In addition to therapies and groups, Playskill’s social events have a really friendly community feel. We’ve been able to meet staff and families outside of Cara’s session, and meet children at different stages in their journey. Feeling ourselves to be part of this community has given us confidence and assertiveness to check in with expert practitioners, and a steer on where to focus our efforts when we discuss Cara’s progress with other agencies – nursery, medical professionals at Great Ormond Street, NHS practitioners and the County’s Children’s Services.

The isolation and fear we felt in the early days has long gone and we feel more in control of our child’s development with Playskill’s expertise. Three years on, we continue to find all the support we can for Cara, to give her the best we can. We’ve learnt to celebrate the ‘wins’ when they come – and they seem to keeping coming - whether it’s Cara’s dramatically increased mobility or the fact she is slowly beginning to use language. As a parent you’re of course far too close to your child to notice the tiny changes every day, but every now and then we get a reminder. An old report, a photo or video from last year, or a relative who hasn’t seen Cara in a while tells us how far she’s come along. Playskill has been central to that process, and we’re forever grateful."

Tim, Cara’s dad