It’s Debbie here, I’m the Finance and Admin Officer at The Chronicle Sunshine Fund.
This is the first time I’ve ever written a column but as my one-year work-anniversary is
approaching, the team thought it would be a good idea to share what my first year has been like with the charity.
One of the big things I’ve learned since being with Sunshine Fund, is that I assumed far too much about children with disabilities, something I think a lot of us are guilty of.
I genuinely thought that the NHS provided everything a child needed if they had a disability or additional need, which I’ve later learned absolutely isn’t the case.
I’ve also learned that it’s a postcode lottery as to the support, equipment and facilities disabled children can access due to budget cuts and different level of funding across regional NHS trusts and social services.
I think we all maybe assumed that parents are handed a magic list of equipment or leaflet with every phone number they’ll ever need, or if you didn’t assume this, the thought maybe didn’t cross your mind if you’re not in the situation to need think about it.
They’re not handed a magic list and they’re not handed a bag of equipment to take home.
The reality is, every child is different with individual needs that need to be met.
The list of equipment a lot of our children need is endless, and costly, and as they grow so quickly, parents have no choice but to apply to charities like ours for support.
I’ve learned about the hardships so many of our families and children face on a daily basis just to do simple, everyday tasks that we take for granted.
As a mam of two, you get wrapped up in busy family life and know that when you need to do something like buy a new pair of shoes, go swimming or go to the park, you know exactly where to go and how much something might cost.
Our families spend hours, days, weeks, researching where they can take their child on a day out so that they don’t miss out on fun with their siblings, they have to research whether there is enough disabled parking bays, or accessible changing facilities.
If they need to buy something for their child, there’s a good chance it’s going to cost three times as much, so that it meets the individual needs of their child.
Yes, it’s hard for us all, but I’ve always believed children with disabilities and additional needs were provided everything they ever needed because of our NHS.
One comment has really stuck with me and I heard it within my first few weeks of working here.
We funded 12-year-old Oli with a specialist motorised wheelchair back in 2020, and we featured his wonderful family in our 2021 video.
He made a comment that he can now reach the DT and science benches in school because his chair can go up and down. I was speechless.
I never once considered all of these daily struggles, like a child simply being able to access facilities they need to learn at school.
I’ve learned so much about equality, diversity and inclusion and know how to use inclusive language, and what language could be offensive to someone with a disability.
I realise how much more needs to be done in our region to ensure that our children can
reach their fullest potential.
This of course is just a snapshot of what I’ve learnt, but it really highlights some points that I think many of us are unaware of.
We receive absolutely no funding from the government or the NHS, and need to fundraise ourselves to keep supporting our families.
Knowing that has been a huge motivation for me and I can proudly say that I love working with such an incredibly passionate team and amazing charity.
I’ve loved meeting so many children and families in the last 12 months and feel humbled that I can contribute to the lives of our sunshine children, giving them the best quality of life with the opportunities they deserve.
Here's to another fabulous year!