For our 40th anniversary this year, we have decided to have a 'Fundraiser of the Month' throughout the year. This month, we have the Scott family. Dad Darren shares their story below.
“Our world was shattered when Sophia was diagnosed with MPS IIIA, (Sanfilippo Syndrome) on the day before her fourth birthday, seven years ago.
We had no warning or any indication of the severity of Sophia's condition and our lives instantaneously changed and have never been the same since! The heartache, pain and suffering have been unimaginable, yet we must fight on and try to live as full a life as possible whilst cherishing every precious minute that we have with our princess.
When we felt lost and isolated, the MPS Society was there to try and provide some guidance and support for us. The MPS Advocacy team was also a real help when it came to key milestones like schooling and finding out what other support systems were available to us.
Furthermore, we were privileged to have been invited to Lapland with the MPS Society for a truly memorable trip which we shall never forget, and we also had the opportunity to meet with other families many of whom we are still in touch with. Personally, this trip helped to raise a dark cloud of depression for which we will always be grateful.
It was always good to attend the MPS Society conference to meet with others in the same position and the knowledge gained from the medical and scientific updates were invaluable in helping provide knowledge and hope in our fight against this currently untreatable condition. We will never give up and always hold onto hope which is why we feel it is important to not only provide the best life for Sophia but to give back and contribute overall in helping to support others and put our faith into research.
We have organised and participated in numerous fundraisers and events to help raise funds and awareness from The London Marathon, Highland Games, festivals, Dinner and Dance events, sponsored walks, cycles, silences, haircuts, bake sales, radio shows, press articles and even television. Over the years, we've raised almost £50,000 for charity over the years, which is an amazing amount.
Lastly, we have a large social media presence which is a platform we use to reach as many as possible which even led to a meeting with the First Minister of Scotland and a private invitation for Sophia to attend the Military Tattoo with her.
Finally, it was a privilege to have spent some time with the MPS Society founder, Christine Lavery, at a conference in San Diego whose wise words helped to provide a basis for us to fight on. We would like to thank the MPS Society for their support and are grateful that we can give something back to them.
Love Darren, Amanda and Sophia xxx”
The pictures include Darren, Amanda and Sophia on holiday and Sophia showing her smile and character.
At the MPS Society, we’d like to say a huge thank you to the Scott family for their ongoing support!
Edited by Rhia Arden
If you would like to view the family's Facebook page, please click here.
If you are interested in donating to the MPS Society, please click here.