This GoFundMe has been set up by HMP Lewes staff to support our friend and colleague and his family. It aims to help raise funds for essential equipment to support daily life, as well as contribute towards vital charity-led research working towards life changing treatment.

Any support you can give, whether through donating or sharing, means so much. Here is their story below:

'All kids need a little help, a little hope and somebody who believes in them.' /Magic Johnson/

Leo is a 6 year-old boy with an ultra-rare genetic metabolic condition called PGAP3-CDG. There are roughly 75 known cases across the whole world.

This condition affects every single aspect of Leo's development, most obvious issue having an affected cognitive function, as it presents with an intellectual disability and autistic traits. He has no words and has physical struggles. Affected metabolic processes affect how each cell in his body works, which results with various health issues.

As most rare diseases, it has no cure. Yet. We are very fortunate as we have found a charity in the US called 'Moonshots for Unicorns' www.moonshotsforunicorns.org , they are working together with scientists and laboratories to develop a cure, which would mean having a gene base editing therapy. So far the research shows that this is going to be a very successful therapy, which would restore normal cell function. Provisionally, they are 3-5 years away to finally offer this to few affected children, one of them could be Leo! Of course, apart from the actual research, this relies on fundraising and without the support of wider community this will not be achieved. All funds raised will be transferred to Moonshots for Unicorns and every single penny will get us closer to cure!

This research is unique as upon successfully applying this to PGAP3, same concept could be similarly applied to many more single-gene disorders, many of which present with autistic traits. Furthermore, Leo's case is unique as his main diagnosis until finding a genetic cause to his symptoms was autism. His mum now takes every opportunity to advocate for thorough investigations in cases with ‘profound’ autism and intellectual disability and not stopping on autism as a final diagnosis.

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Alongside this GoFundMe page, staff at HMP Lewes will also be holding a fundraising event to show their support. This will include a bake sale, and plenty of fun activities for everyone to get involved in.

The Lewes family are proud to come together to support Kris and his wife, and most importantly to help give Leo the bright and happy future he deserves.