Charlie Manfield is our champion!
All about Charlie, by his mother Susan
Our son Charlie was diagnosed with leukaemia 5 days before his 2nd birthday in Oct 2010. It was the worst day of our lives; we had heard of leukaemia but didn't know exactly how our lives were going to change. The first year was definitely the toughest for Charlie, us as his parents and to everyone who knew us; family, friends and work colleagues. Mike had started his own business the previous year and I had to take time off from work to care for Charlie, to understand and administer some of the treatment plan and go back and forth to hospital regularly.
Charlie depended on us in times of need; when he was ill and needing a hand to hold during treatment or hospital visits. But as his parents, who do we turn to when we need a shoulder to cry on, a hand to hold, or a friend to listen? Whether it’s someone reminding us that we're doing a good job, or a little advice on an impossible situation, we as parents need support too. Unless we took care of ourselves we were no good to Charlie who needed us to help take care of him. We were reminded daily to take care of ourselves, which sometimes might sound selfish; however, we can't help Charlie and others if we break down! As time went on, we learnt more about how to deal with whatever faced us. We had a tough time with some side effects and the unpredictability of life. We dealt with whatever we were faced with, reflected on that particular day and moved to the next day.
The team at Sebastian's Action Trust are real life savers and have supported us through the last 3 half years. They have given us quality family time through holidays at The Bluebells as well as day visits and the occasional overnight stay. Charlie absolutely loves 'his holiday home' where he can run free, swim, play in the sensory room and hammer at the drums. Bluebells is a very unique place which feels like a place of peace and sanctuary. It’s not just about the children as it has also given us the chance to meet other families in similar situations, which is a great comfort.
Charlie is now 5 1/2 years old and finished his treatment Dec 2013, he is doing very well and taking it all in his stride. Charlie doesn't really understand what is going on but is quite inquisitive and will ask some questions. He looks forward to his hospital visits and sometimes even asks to go for a 'play day' on the days we don't need to go! Most importantly we make sure everything we have done and everything we do with Charlie is FUN. Charlie started mainstream school last Sept at Langley Hall Academy and has settled in really well.
About the fund
We want to help the Trust make the support they gave us available to the countless of other families who walk in similar shoes - through uncertain and stressful times.
Sebastian’s Action Trust helps in so many different ways- from one to one support with someone to talk to, home visits and appointments with their wellbeing therapists who offer soothing treatments to alleviate some of the stresses that can make life feel impossible. It might sound frivolous to have a manicure, pedicure or a massage but it is something so simple to make you feel good and allow you time away from being a carer, even for just an hour. Other Trust events are aimed at getting parents to meet others, such as the mums pampering day with lunch and afternoon tea, dads go-karting night ( which was very competitive!) to whole family occasions like the Christmas parties, Easter family days and other themed family days. The highlight of the month for me personally is the monthly 'Chill n Chat' sessions which are in a hotel away from home, with time to meet others and no-one saying 'mum, mum, mum'! If we said a simple 'thank you' to the Trust everyday till the day we died, it still wouldn't be enough.
Running total and target
So far we have:
- Amy Carroll, Berkshire, took part in a charity bike ride in June 2013 cycling from London to Paris and raised £1659.20
- Toad Hall Nursery in Langley held a summer fayre in 2012 and raised £221.90
- Daddy and big brother chest wax raised £141 in June 2013
- The Manfield whole family took part in the Crown & Tiara 2013 , dad and big bro walked, mum and Charlie helped at registration and on refreshments and raised £600
- Toad Hall Nursery held their summer fayre in July and raised ... money still being counted.
- Taken part in the Trust’s Crown and Tiara walk 2012 and raised £1050
- Taken part in the Trust’s Crown and Tiara walk 2011 and raised £750
- Charlie's grandparents and friends held a charity day in Valencia Spain 2011 and raised £690
- Charlie's grandparents and friends held a charity day in Valencia Spain 2012 and raised £1000
- Charlie's godmother Karen and friends in Newcastle raised £350
- Work colleagues did a 3 peak challenge and triathlon 2012 raised £1000
- Work colleague did a half marathons and raised £500