Sarah & Michael’s Special Day stories

For a family facing a heart breaking future, Special Days have provided wonderful memories of happy and carefree times. Tracey and Mick talked to us about what Special Days have meant to their family…

All three of our children were diagnosed with the same condition, spinal cerebellar ataxia. Our eldest daughter, Kayleigh, died at just 20 years old after battling the debilitating condition. At the time she was ill, we didn’t know about Willow. As our middle daughter Sarah’s condition worsened, my husband learned of Willow.

It was wonderful to hear that there were people who were there to help with the positive things, not just to deal with Sarah’s medical needs. At the time, Sarah was suffering with acute autonomic neuropathy, which means her nervous system was shutting down. Sarah was just 22, wheelchair bound, fed through a tube, had severe learning disabilities and required 24 hour care.

The look on Sarah and her brother Michael’s faces when we arrived were a picture; they were so excited.

Tracey

When we heard Sarah was eligible for a Special Day, we decided to do something that would help us forget the day-to-day stresses and provide us with the quality time we craved as a family. So we chose to go to Butlins. Because of Sarah’s illness and the difficulties with transporting equipment, medication, etc, a day trip just wouldn’t have been possible. The short stay at Butlins gave us all a chance to really wind down.

Because the children were having so much fun, my husband and I were able to relax. At home Sarah often stayed in bed all day because of the pain but on the trip the excitement took over and she was out of bed by 8.30am, doing things that she would never normally be comfortable doing.

The staff were so great and treated Sarah like a VIP; it made the whole experience even more special. We saw a Christmas pantomime during our stay and a Winter Wonderland show. It was really fun packed and kept Sarah distracted from the pain.

Sarah’s health deteriorated over the next year and she sadly passed away less than 12 months after her Special Day. The happy memories of the trip stayed with Sarah to the end and the photos still make us smile.

Making plans

Having had three children with varying levels of disability, our main priority has always been to provide them with quality of life whenever we can. So for our children, and for us as a whole family, to benefit from a Special Day is just wonderful.

We now focus all our energies on Michael whose condition has begun to deteriorate. At 28 he is wheelchair bound, has severe learning difficulties and major nursing needs. We are now making plans for Michael’s Special Day. With his disabilities limiting him to the house much of the time, he lives for his favourite TV shows including X-Factor and Britain’s Got Talent. Our hope is that on his Special Day Michael will be able to watch one of his favourite shows live.

Some much needed happiness

Willow always pull out all the stops and we know Michael will get an experience to remember. But it’s not just about the day itself – it’s so much more. As soon as we filled out the application, the excitement started.

Having a date in the diary is so exciting and will put a smile on Michael’s face. Just like Sarah’s Special Day, the mementos and photos after the day means the smile will continue. Just like the Butlins trip, Michael will want to tell all his friends and staff at the hospice – it’ll give him a real buzz, and some much needed happiness to what is otherwise a really tough life for him.

For us as parents, to make our child smile is a precious gift. Willow has already had a huge impact on our family, and continues to do so. We know the magic of a Special Day will have a similar effect on the lives of other families living with the difficult realities of serious illness.

We were delighted to have the Gray family; Tracey, Mick and their son Michael, pop along to help cut the ribbon of our first charity shop opening last month. Find out more about the opening.