All about Otis

Hello Everyone

My name is Rachael and I am fundraising for my friends gorgeous little boy OTIS

Otis is three-year-old with a very rare condition called Miller-Dieker lissencephaly. This is a life-limiting condition, and one where most sadly don’t see their 2nd birthday. Otis does not and will never be able to sit, crawl, walk, or talk. He has extremely complex medical needs, including epilepsy, which is uncontrolled, requiring an ever-changing cocktail of medications – but even then, he often needs rescue medication and 999 calls. We’re in hospital every month, and he attends St Oswald’s Hospice for respite. He is under the RVI’s children’s palliative care team.

For those who aren't aware, my husband and I have our own businesses, we are doing our very own version of DIY SOS for the family. We are building a downstairs extension to their home for Otis, which will include his own bedroom and own bathroom – plus hoists and all the other specialist equipment he needs.

The reason for creating this just giving page is to make life just that bit easier for the family, we are starting the DIY SOS build on Monday 9th June 2025. With some outstanding support from builders merchants, trades and organisations we have secured the materials for the build. We haven't however got the funds for a specialist bath for Otis. The build will include Otis' own bathroom, but the bath we are installing is a standard bath. Otis really requires a specialist bath which sadly has a HUGE cost attached.

A whopping £15,000! Yep, you read that right! £15,000 for a bath!

SO.............I cannot believe I am saying this, BUT!!!!! I am doing the GNR 2025, my aim is to raise as much money as possible, the hope is to reach the full amount, my dream is to smash this target so we can really complete this build to the level required for Otis and his fabulous Mummy and Daddy to lead a much easier home life so they can focus on quality family time and not worry about moving Otis around the family home, or struggle to lift him out the bath.

Please may I ask for you to donate if possible, no matter how big or small. If you're unable to donate, can you please share this page to get this out far and wide. Every single penny is appreciated.

All my love, thank you

Rachael

#TeamOtis #ItsallaboutOTIS