"My Time to be Me"
What better than having some time to yourself after a long day?
It's no secret that at some point, every parent/carer/guardian, grandparent and sibling needs a little time to themselves. Having your every day be consumed by a child's livelihood and wellbeing is hard. Now throw a life-limiting illness into the mix.
The fact is, siblings of children with life limiting conditions have higher levels of emotional and behavioural difficulties, and lower life quality than population norms, according to a report published by Fullerton and Totsika.
Three clubs, three counties. The Amy and Friends charity holds weekly clubs for those with life limiting illnesses, and their siblings in the Wirral, Rhyl and in Flintshire.
Who are we and what do we do?
Amy and Friends is a charity that was set up in 2007 by a woman who's daughter, Amy, had the life limiting illness of Cockayne Syndrome (CS). CS affects the entire body, from premature ageing, to loss of sight and hearing, from early onset dementia to gastrostomy feeding. The average lifespan of a child with Cockayne Syndrome is 8.4 years. Another in the group of ageing diseases is Trichothiodystrophy, a disease that has the same prognosis as CS; premature death.
Amy and Friends recognises how difficult it can be for parents/carers/guardians and siblings to live with a child who has a life limiting illness. From equipment, to feeds and keeping up with activities, a large portion of the day can be seen as a struggle. That struggle does in no way mean the families are not happy. Amy and Friends has seen some of the happiest faces on children. Our charity goes above and beyond the call for help from some of these families.
We find and fund equipment, we seek the hard diagnoses, we provide some respite, we share information, advice, support and love. Daily, we provide advice and support across social media platforms, phone calls and messages. Weekly, we hold our clubs. Monthly, we have a rare disease clinic in London, where our children can see practitioners (medical, dental, etc) all at the same time. Finally, annually, we hold a conference attended by families, friends, and medical professionals.
Cockayne Syndrome occurs in 2-3 children per million, globally. Amy and Friends currently supports 471 families worldwide.
Group picture from annual conference.
We don't just support families with CS, but families who have children that have ASD, ADHD, etc., as well as parents that have long term conditions. Our siblings clubs are sanctuaries, somewhere to free your mind and engage with people that aren't relatives, people that have lives outside of their homes. A haven for children who experience things at home that not all children experience.
Covid-19 and Club Expansion
Due to the recent pandemic, we have had to stop siblings club for nearly five months. Amy and Friends has sent weekly activity packages to all 471 families, to make up for the lost evenings and days out that we would usually provide. Paints, craft boxes, sensory toys, Rubix cubes, the list goes on. Every week, we recieve pictures of ecstatic children, smiling faces, arms bearing boxes laden with toys. Every week, we wish we could see those children. As of 03/08/2020, we have sent out over 16,000 activity packages.
Since the beginning of lockdown, our Amy and Friends siblings club teams have been inundated with requests to join the clubs. We are now facing expansion of all three of our clubs. Last year, we spent £15,000 on rent and expenses for the three clubs, without considering the wages of the staff. In terms of sessional work, it costs £25 per hour (club is two hours), for three clubs, for 50 weeks of the year, costing us on average £7500 per year. £22,500 per year on just three clubs. In looking at expansion, we have to provide buildings big enough for more children, more equipment for activities, and more snacks.
"thank you xx"
"Very happy girlie here. Thank you"
"Thanks so much for another goodie box. Perfect timing as it’s been a traumatic day! Thanks for perking her up!"
"Thank you so much for the craft going to enjoy them today as I was being a grumpy girl yesterday"
"Thank you" notes from Wirral Siblings Club.
Members from Wirral, Rhyl and Flintshire Siblings club meeting AJ and Curtis Pritchard.
Members from Wirral, Rhyl and Flintshire Siblings club on a day out in Liverpool.
Members of the Wirral, Rhyl and Flintshire Siblings Club at Cinderella Pantomime.
Members from Wirral, Rhyl and Flintshire Siblings Clubs at Jumpin Joseph's Trampoline Park.
Contributions to our group would allow us to look for bigger buildings to rent, preferably with outside spaces. We would be able to invest in durable activities for the children, and would be able to provide small meals, since the club is held after school, and throughout the holidays, excluding this year. Usually, we would provide days out during the school holidays for every child that attends our clubs, as well as the siblings and parents, and not being able to make those memories this year has been heartbreaking for the families and staff, as well as confusing for some of the children.
We, as a charity, are incredibly thankful to everyone who has stuck with us this far. Thank you so much, for taking time out of your day to consider our project. As above, the impact of reopening and expanding of our clubs would be astronomical. The idea of being able to reopen to vulnerable children, to support families face to face again makes us incredibly happy. We can't wait to see everyone's faces, this year has been absolutely devastating and debilitating for us all.
Again, thank you from all at Amy and Friends.