Thanks for taking the time to visit my JustGiving page.

I’m doing a Wingwalk at Headcorn areodrome on the 29th August @12.30

to help raise funds to help fund research into CASK Disorders.

My Grand Daughter Jess 24 has a missense of the CASK gene with Nystagmus and severe learning difficulties.

It’s heartbreaking for us as a family when we hear the most awful news that one of our few CASK warriors have lost their fight, before a potential cure has been found.

Currently we have approximately 40 uk families and 350 worldwide total

So please help me raise some much needed money to help fund research

Thank you

CASK is the name of a gene essential for healthy development of the brain. Mutations in this gene cause a range of disorders that all affect brain function. The two named disorders are MICPCH and X-linked intellectual disability with our without nystagmus. To simplify things, we often use the term CASK to describe all disorders.

The CASK disorder MICPCH is ultra rare. The brain doesn’t grow as it should, giving the child microcephaly (literally meaning ‘small head’). Most children show abnormal brain morphology, such as a small cerebellum and pons. Children with MICPCH can have a multitude of problems, including intractable epilepsy, inability to feed or drink, inability to walk, low tone, poor balance, global developmental delay, vision and/or hearing loss.

Many children with CASK cannot communicate other than by crying, smiling or laughing; however a small minority do acquire language. Caring for a child with CASK is exhausting since many suffer from sleep disturbances. Often, children with CASK cannot play independently due to the inability to control their limbs effectively. The children who are less medically complex can display challenging behaviours due to their low cognitive function.

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