Jennifer is 10 years old and diagnosed with hypermobility type Ehlers Danlos Syndrome. Jen has widespread chronic pain in her joints, neck and back, she is unable to currently take a suitable pain relief due to a liver/lung disease called Alpha 1 anti-trypsin deficiency.

Over the last 6 months Jen’s mobility has got worse with more pain and subluxations (partial dislocations) of various joints. She is missing a lot of school. She finds it difficult to sit comfortably and sometimes struggles to get up from a sitting position. She finds writing hard and it causes pain due to having such loose shoulders, wrists and finger joints. It has been discovered Jen has lordosis in her lower back and when her back is straightened she can’t lift her arms above her head.

Jen’s OT has recommended a special postural support chair to help Jen especially as this year she’ll be taking her SATS. The purchase of the chair has to be put to a funding panel at Northamptonshire County Council and everyone knows whats happening with them at the moment. Jen’s OT has said its likely to be a battle to get the chair and the next funding panel meeting isn’t until the end of September.

We are hoping, with everyones help, to fund this chair for Jen ourselves so she can get it sooner but also because we‘ve been made aware if Northamptonshire County Council fund it then when she moves up to the Secondary school her older sister attends in Warwickshire it will be taken away from her and we’ll have to go to another council and ask them to fund it.

Thank you for reading.