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"No, sorry", or "I already donate to NSPCC" were the words I usually uttered to 'chuggers' on the streets; Professional Fundraisers paid by charities to raise funds. I would audibly groan at the umpteenth 'JustGiving' page on Facebook and would scroll, scroll, scroll.....
Oh how things change.
In 2015, our son, then 3, was diagnosed with Duchenne muscular dystrophy (more about that another time). Due to the nature of the condition, it's degenerative, so time is of the essence basically. We knew we needed to do everything in our power to make him live a long and happy life. Practically, that means getting money to pay for scientists and research into potential treatments and ultimately a cure. In reality, it also means getting money to enrich lives, through providing education on the condition, giving internships to youngsters with Duchenne, education programmes, supporting families and everything in between.
This is what Action Duchenne do and why we chose to support them (more about that another time also).
But anyway, back to the story in hand.
So, Lex threw himself into fundraising. He has completed numerous self-funded feats in our son's name, being awarded ‘Fundraiser of the Year’ in the St Neots awards 2017, he cycled from Newcastle to London on a mountain bike, ran for 24 hours in the Nevada desert, swam in 2 degree Glasgow water up multiple locks, jumped out of a plane to name but a few of his endeavours.
Throughout this fundraising, we have built Strong for Samson our Facebook page and have a 'JustGiving' page which has reached £4,000.
I wanted to write this today to tell you what it feels like to be on the receiving end of a donation, for a challenge you are doing, in the name of your dearest son.
It is amazing.
In our darkest hours (and I can tell you they don't get much darker (again, more about that another time!! and bring your tissues to that treat...) we think of all our friends, family, supporters, strangers, who have dug into their own, hard earned money and donated to save our son's life. It may seem like a tenner to you, but to us it is a life-line, it is confirmation that we ARE doing the right thing, that we ARE supported, that we are NOT alone. And I can tell you, that is priceless.
I no longer hate fundraising, I love it. I relish donating to friends who are stepping outside their comfort zone to do something new, like cutting their hair for Little Princess Trust, or doing a bake sale for Stand Up to Cancer. Because I know, that, when the going gets tough for them, they will think exactly WHY they are doing the challenge and they will think of the people who have donated to support them, and it will get them through.
I love fundraising for our cause. I now do it every day as, in the words of Tina Turner 'I left my job in the city....', to dedicate my working life to Action Duchenne and work full time for them, fundraising, carving corporate partnerships, supporting fellow families, and improving the lives of the young people living with Duchenne.
Its the first time I have felt an expert in what I am doing, spreading the word about Duchenne, getting people involved in what we are doing, raising money along the way to make this stuff happen. And I keep that hope in my heart, that one day, the amazing scientists we are funding will find that molecule which will keep our precious son on his feet for longer, will keep his heart beating, his lungs breathing. Because THAT is the ultimate dream.
People can achieve the most wonderful, awesome, unbelievable things with support from others. Thank you for yours.