Charity inspiration interview - The Shay Kenny Miracle Trust Fund
In our latest inspiring interview, we talk to Marc Kenny from Aylesbury. His fundraising journey began when he and his wife discovered their 14 month old son, Shay, had a condition called PVL (Periventricular Leukomalacia), which affects both his speech and mobility.
After losing his home and being declared bankrupt, the family had to move into council accommodation. However, finding a house with a suitable stair lift for Shay proved challenging. Here, we talk to Marc about his dedication to fighting for equipment for his son, and what other charities and organisations can learn from his struggle.
How and when did The Shay Kenny Miracle Trust Fund begin?
We finally moved into our council accommodation, after weeks of looking at houses that simply weren't adaptable. There was a stair lift in this one, but one that was designed for an adult, not a toddler. Despite my pleas to the council to adapt our home for Shay, they said they didn't have the budget. This is when I turned my attention to fundraising events in order to raise the funds myself. I started my first fundraising activity back in August 2012 and have never looked back.
What fundraising activities have you been involved in?
All sorts! The first was a summer fete and it was a huge success, which was very encouraging and uplifting for us. It received a huge amount of publicity, including the press, radio, and attracting the support of MPs who were on our side from day one. Aylesbury Utd. have been great supporters too. The fete raised £2,000 to go towards the stair lift and it created such a stir that the council actually gave us the money in the end. It was only when they received bad press, though, that they decided to write the cheque.
We also set up a sponsored Zumbathon, which was a great laugh and got us a lot of publicity. We then arranged a fundraising comedy night with two bands. In total, we have raised £6,500 and every bit of this has gone towards adapting the house for Shay. Before, our garden was not safe for him to play in; now we have created a 'sensory garden' with plants, numbers, mirrors etc., which he just loves.
What challenges have you faced along the way, and how have you overcome them?
The main challenge I've faced is ignorance towards disability. Because Shay doesn't have the outward appearance of being 'disabled', people don't understand his situation and his brain injuries as they take him on face value. This is largely due to lack of education, both from parents and schools.
I also get extremely frustrated and angry with professionals who are ignorant as well, and how more money is not put into making places wheelchair friendly. However, I've tried to put my energy into raising awareness and turn it into a positive.
What are your hopes for the future?
I'm hoping to find others who are in a similar situation to ourselves so we can start helping each other with joint events and shared funds. There are so many children out there who need help, and luckily I've made a lot of contacts through fundraising so I'm now in a position where I can really make a difference.
Do you have a snippet of advice that you could offer to charities or people in a similar position to you?
All I can say is don't give up, and don't take no for an answer. Anyone involved in charities needs to stick to their guns and fight all the way. What can start as a few rumblings can end up raising a lot of awareness, so make sure your voice is heard. Get active on Twitter and Facebook, get on the radio and in the papers and, if you can, get prominent people involved, such as MPs, councillors and celebrities.
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