Harlum was born at 35 weeks and was poorly from birth. After a stay in hospital we took him home, unaware that anything major was wrong with him. When he was 6 weeks old he was re-admitted into hospital with jerking movements, further tests all came back negative but he was continued to be monitored by a consultant every 3 months.
It wasn't long before he was diagnosed with Cerebral Palsy and a few months later with Dystonia.
Harlum takes Sinimet, baclofen, cetirizine, sodium picosulphate and movicol. He has had several courses of botox as well as surgery in early 2010 to release the psoas tendons, none of which have worked.
Harlum uses a powered wheelchair to get around and attends the local village mainstream school with full time support.
When Harlum was 4 his sister Tahlia-Annikki was born and it wasn't long before she too was diagnosed with Cerebral Palsy. In September 2010 it was decided that they had a genetic condition similar to Cp and Harlum underwent further inverstigations to determin what condition they had, these included skin and muscle biopsy, lots of blood tests repeated MRI scand of head and spine and a lumber punture.
In June this year (2011) we got the results back and so far we still are unclear what diagnosis they have, Harlum has since had more tests done.
What is clear is that they both have the same condition and we hope to find a diagnosis and appropiate treatment in the future, until then we are uncertain what the future holds for them, but they carry on smiling.