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In July 2015, I was struck by a debilitating mystery illness. On the Thursday, I had ‘flu’ like symptoms. The Friday has been completely lost and by the Saturday, I was in hospital with severe photophobia, sickness, headache, slurred speech and ‘seizure’ like episodes. What followed was several weeks, in 3 different hospitals and months of both private and NHS physiotherapists, occupational therapists and speech therapists.

Unfortunately, all 3 of my children have been affected by the same genetic defect and have been severely ill in hospital because of it. We have always been fortunate enough that they’ve made full and quick recoveries. 

In March 2019 our little girl was again admitted to hospital and our nightmare began. Olivia had a temperature over night, she was being violently sick, stopped speaking and collapsed at home. Upon admission to hospital, she suffered two seizures and tested positive for flu A. After 6 days in our local hospital, with drugs not working, Olivia was put into a coma and transferred to Bristol for specialist neurological care. When she was extubated, she had to relearn to walk, talk and relearn the most basic skills a 3 year old possesses again. Words will never be able to describe the heart ache of seeing your child, who loves colouring, unable to hold a pen or asking to leave a room because her favourite song’s come on and she can’t dance to it like normal. 

Today, Olivia’s ataxia has largely gone and other than having dysarthric speech, she’s doing amazingly.

This year to mark Rare Disease Day on 29 February 2020 and World Encephalitis Day on 22 February 2020 we’ll be hosting SQ’s 4th annual Masquerade Ball on 28 February 2020.  This will include a 3 course meal, a raffle and a disco. The proceeds will be split equally between Rare Disease UK and Ronald McDonald House Charities. Rare Disease UK is a charity incredibly close to my heart not only because of my own health battles but my children’s as well. Ronald McDonald House has been a saviour to us on two occasions now. Once, when Olivia was put into a coma in November 2016 and transferred to Southampton hospital; an over 300 mile round trip in the early hours of the morning with a newborn in tow- I don’t think I’ve ever been so grateful for a bed! Again in March, being 96 miles away from home, in hospital for 12 days. Ronald McDonald house meant we didn’t have to worry about where we were sleeping; where we were showering; where we could go that wasn’t the hospital or the financial implications of any of it- we could just concentrate on our daughter. And the Ronald McDonald House charities alleviate that worry for thousands of families. In fact, since it opened in 2002, the Ronald McDonald House in Bristol alone had supported over 7000 families. It costs around £270000 per year to keep their doors open to families like ours, and as an independent charity, receiving no statutory funding, they rely on donations and fundraising events like this to raise that money.

This year will mark 5 years since my mystery illness changed our lives. To mark Rare Disease Day in addition to hosting our annual SQ Masquerade Ball on Friday 28th February 2020 this year to raise more awareness throughout January and February, Olly will be running a ‘Rare Reality Run’: an accumulative 221 miles; this being the distance between Braunton and the University College Hospital, London where he took me to be treated. To cover the distance, Olly will have to run 26.67miles a week. That’s over a marathon every week!

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