In August 2016, 17-year-old E first joined us in one of our residential homes. She has Dandy-Walker Syndrome, a malformation that affects brain development, primarily of the cerebellum; the part of the brain that coordinates movement.
We have been so blown away with the incredible transformation she has undertaken with the support of our team over the year, so we wanted to share her story.
E is just one of the many residents we have been proud to support to improve their quality of life. We knew she had the potential to develop and achieve with our team working with her collaboratively and intensely and with the further support of her external professionals.
In the beginning she would stay awake for days, refusing to get out of her wheelchair. When she did go to sleep, it would be in her chair for small periods of time at random hours. Recognising that a decent night’s rest is a hugely important factor to general mood and well-being, her sleep patterns were one of our first focus points. She didn’t want to be up high on a regular bed, so we began with a mattress on the floor which was a satisfactory compromise. Once we’d overcome the resistance to staying in bed as opposed to her wheelchair, we built up a routine so she would wake up at the right times and not spend the day asleep. In a short space of time, she decided she felt comfortable enough to move into a bed rather than a mattress on the floor. We swapped her single for a double which she loves.
E is a fantastic young lady who has come so far. When she first moved in, it took around two hours to get from the house into the car and now she’ll happily tell you if she wants to go out and does so without much fuss. She now communicates effectively and calmly with the team and tells us when she’d like help, or if she is hungry, tired, or thirsty, which was not possible at the beginning. As well as better interaction with the staff she also spends a lot more time playing with other residents.
Although her GP is local, E is funded through a different Local Authority which caused some initial complications but our perseverance ensured we got what she needs.
Perseverance has been consistent throughout the last year, we’ve been able to make some fantastic changes with lots of little successes along her journey. E’s significant achievement has been her starting to walk. When she arrived, she spent most of her time in her wheelchair. She progressed over time to standing more and more frequently and eventually, with the help of a walking frame, she managed to move around independently. She now attends school full time without support. It was an emotional day for us when mum came to visit and E walked to the door with support staff to meet her. The expression on her mum’s face was priceless.
It is personal journeys like this we strive towards for all our residents along with those we support at home and in the community. If you’d like to know more about what we do, please get in touch today.