The Mason family announces a September 5 fundraiser in Inverness to support Sophie’s Story, aiming to create a lasting legacy for their daughter with Batten Disease
Sophie’s Story Announces Fundraising Event
Sophie’s Story has announced a fundraising event for later this year. This follows a “heart-breaking” festive period. The goal is to create a lasting legacy for Sophie Mason.
The campaign began at the end of 2024. It was started by the Mason family, Keith and Lizzie, after their daughter Sophie was diagnosed with Batten Disease. This condition is incredibly rare and degenerative.
Only one to three children are diagnosed with the infantile version of the disease each year. Symptoms include progressive vision loss until blindness, loss of motor function, and loss of the ability to swallow food.
More than a year after Sophie’s diagnosis, the disease is taking its toll. In a New Year’s post on social media, the Mason family shared their feelings about the occasion.
“New Year is a bittersweet time for us,” they wrote. “It’s difficult to believe that a whole year has passed by so quickly. Looking back at 2025, it’s hard to comprehend what we’ve been through with Sophie. At times, we’re not sure how we survived the year, but we have.”
“Although it has been tough, we have had some lovely times together as a family. We enjoyed trips to Disneyland, Lossiemouth, and Cornwall. We had days out, kids classes, birthdays, fundraising events, and more low-key moments, but really just enjoyed spending time together.”
“Comparing Sophie now to last Christmas just breaks our hearts. Yes, she’s holding her own and is in good health, but the regression she has been through has been really hard on her and tough for us to watch.”
“She’s completely immobile now. Her eyesight has deteriorated, her twitching and jerking have increased, and her tolerance of food has declined. She is now fed liquid feed into her jejunum to bypass her stomach. She is on constant medication to help with her symptoms and to keep her as comfortable as possible.”
“Life has been tough for her. I don’t doubt it has also been frustrating, scary, and confusing for her too – it certainly has for us.”
“For many, the new year is a fresh start, but for us, we face another year of watching Sophie decline. 2026 will likely be a step further into Sophie’s journey, and we are fearful of what that will entail. We will try our best to create positive moments for us as a family.”
“We may not be celebrating the new year, but we want to send our best wishes to a huge list of people we owe our thanks to. There are honestly too many people to thank individually.”
The generosity of friends, family, and strangers has allowed the Masons to adapt their home. This makes life a little easier for Sophie.
Keith and Lizzie have faced a tough learning curve over the last year. They are determined to create a lasting legacy for their daughter.
They have ambitious ideas based on the lack of accessibility for disabled children. These include a service for families facing similar challenges, a hydrotherapy pool in Inverness, and a children’s hospice in the Highlands.
To achieve these goals, Sophie’s Story will start a fundraising campaign. Their first event is Smile For Sophie on Saturday, September 5, at the Kingsmills Hotel.
This event is organized by Sophie’s Aunt Claire and Uncle Chunk. Tickets cost £70 and include a welcome drink, a three-course meal, live music from local band The Shire, a live auction, fundraising games, and surprises. The event aims to create a night full of laughter, connection, and joy while raising awareness of Batten Disease.
| Event | Date | Location | Ticket Price |
|---|---|---|---|
| Smile For Sophie | September 5 | Kingsmills Hotel | £70 |
