My youngest niece (Willow) has been diagnosed with Phelan-McDermid Syndrome. This is caused by a deletion of her 22nd chromosome which can vary in size.

This syndrome is life altering and causes severe challenges in all aspects of her daily life. This includes and is not limited to;  learning, communication, health issues that include seizures, sleep disorder, mobility problems (sitting up right, feeding and more), issues with speech and interaction. 

As she develops day by day her condition can change. She has started having seizures in December 2021 which have been more frequent of late. The likelihood that she will be mobile is getting slimmer the older she’s getting. This condition stunts development and with what she might be able to pick up, it’s at an extremely slow pace. There is a peak point and once that passes the decline can begin.

Not only does this effect Willow but this comes with pressures and changes for her Mum, Dad and sister Sienna. 

PMSF UK conduct great research and supports diagnosed children and their families through award contributions for; specialised equipment, days out for the diagnosed child; sibling treat days or parent rest bite treats. They provide advice on how to navigate various disability grants and support. They also allow the parents of diagnosed children to connect and share experiences. To learn more see the below link. 

https://www.pmsf.org.uk/what-is-pms 

This is why I am raising money to support this charity and choosing to jump out of plane on September 24th from 15,000ft. 

Thanks for taking the time to visit my JustGiving page, don't forget to click yes for gift aid if possible should you donate. 

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