Charlotte’s Story
Charlotte is 24 years old and she lives at home with her parents.
Charlotte has a rare chromosome disorder called Trisomy Mosaic, or Trisomy 9 Mosaicism Syndrome. This means that the 9th chromosome appears three times in some cells of her body, instead of a normal pair. This affects her growth and has resulted in one side of her body growing faster than the other, causing painful scoliosis. She also has no hip sockets so both of her hips are dislocated; she can walk short distances with her walking frame, however she becomes tired quickly.
When she joined The Beehive at 19, Charlotte mainly used a wheelchair but was able to walk around with the help of a frame. However, soon after starting she suffered a severe stroke, which left her in hospital for nine weeks. The stroke left Charlotte unable to walk and unable to eat or drink. She was then fitted with a PEG, a feeding tube is placed directly into the stomach, for nutrition and hydration.
The recently built physiotherapy room at The Beehive provided invaluable space and facilities to enable the charity’s team to dedicate time to helping Charlotte regain some mobility. Charotte grew strong enough to walk the length of the building with a frame.
Unfortunately, lockdown and isolating at home meant Charlotte had less opportunities to be supported to walk and her strength deteriorated. The charity’s team have been working hard with her on this and Charlotte has now gained the strength to walk again. While she becomes tired more quickly than she used to, our aim is to build this up over time.
Access to a hydrotherapy pool would be incredible for Charlotte.
Prior to the pandemic, we were occasioanlly able to take her to our small pool at Langside School. However, this required multiple transfers, hoists, and a car joirney, taking up most of Charlotte’s day and leaving her tired.
To be able to access hydrotherapy a couple of times per week would be an incredible addition to Charlotte’s therapy. She would be able to gain strength and flexibility in the water, and it would relieve the pain caused by her growth condition, through reducing the pressure on her spine and internal organs.
Hydrotherapy also improves Charlotte’s mental health and wellbeing. She can get easily frustrated and often grabs the hair and skin of the people who are supporting her. In the water, this behaviour is not displayed at all, showing the calming effect it has. Whenever she has had the chance, Charlotte has really enjoyed splashing around in warm water and walking in the water with the support of staff.
Charlotte loves having interaction from the team and her 1:1 support staff, in-particular having her nails done and singing songs with help to sign the actions.
When Henrietta Young visited The Beehive to draw people, ahead of the Pictures for The Beehive exhibition, it was clear that Charlotte enjoyed having her portrait done.
“Charlotte is so lucky to have such dedicated staff who always put her happiness before everything. This means she is much more open to trying that little bit harder, which has shown in the fantastic progress made even through uncertain times.”