For MPS Awareness Week this year, we are looking at chasing the signs of MPS and raising awareness of the disease. Sophia Scott from Scotland has MPS IIIA and dad Darren shares how her diagnosis had a big impact on the family.
“In February 2015, 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 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 was invaluable in helping provide knowledge and hope in our fight against this currently untreatable condition.
Holding on to hope:
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.
Lastly, we have a large social media presence on Facebook and Twitter which we use to reach as many as possible. This even led to a meeting with the First Minister of Scotland and a private invitation for Sophia to attend the Military Tattoo with her.
We would like to thank the MPS Society for their support.
Love Darren, Amanda and Sophia xxx”
The pictures include Sophia which shows her smile and character, and Darren, Amanda and Sophia on holiday.
To view Sophia and her family’s social media page, please click here.
To donate to our virtual bucket for Awareness Week, please click here.