Hi Jayne

Just a thought, but has this child had any in-patient admissions to hospital related to her condition? If she has been in hospital, then the Play Specialist who is based on the Ward where she was admitted may well have some adeas that could help you, as the ward play specialist is required to liase with the physio and occupational therapist to ensure they are providing the appropraite therapeutic play while they are in hospital.

Although the play specialist would not be able to provide you with any confidential information, I would expect they would be really happy to provide you with information relating to activities that would be useful.

If this cild has not been in hospital it may still be worth contacting the play specialist at your local hospital, as they may be able tyo liase with the physio and occupational therapist to gain ideas for you for this specialist condition.

As a play specialist myself I am always happy to help if people want to use me as a resource.

Best of Luck

Harriet