In 2020 amidst the pandemic our beautiful daughter Grace was born. She grew and developed into a beautiful little girl but at the age of 2 and a half we started to notice that her development was behind children of her age. We put this down to her not being able to access a lot of things in her early years due to covid. As she progressed towards 4 and the time for starting school her speech and some fine motor skills were underdeveloped and interventions started to take place to help Grace to catch up with other children. But in October 2025 just after Grace started year 1 of school we have been told that what we thought was a global development delay is in fact a extremely rare genetic disorder that occurs 1 in every 70,000 births. In the years 2010-2020 only 86 children in the UK were born with this condition. 

Grace has MPS 3 sanfilippo syndrome. It means that everything Grace learns as she grows she will eventually forget, it is like a child developing dementia. After doing research and being taken care of by a team in Bristol metabolic clinic we know that this condition is life limiting, also there is no cure for this condition it can only be managed to make life as comfortable as possible. Unfortunately for us out of the four types of this condition, ranging from type A through to type D, Grace has type A which has the lowest average life span of possibly 15 years old. 

Myself and Grace's father as well as her two siblings and her whole family are absolutely devastated by this news as any family would be, to see our bright sassy little girl who has the biggest personality and kindest heart have her future limited is heartbreaking. We have had so much support from our families and friends at this difficult time and we appreciate them all so much. 

We are now looking to do as many things with Grace as we possibly can to make sure that the years we have left with her while she is still healthy are the best ones possible, and that is why we are fundraising. We would love to be able to take Grace on some family holidays and spend precious time together with her and our dream is to get her to disneyworld and get her made into a princess as she loves disney, especially Elsa, so much. We just want to make as many happy memories as we can.

lions club glastonbury and street lions club

Chris Ford

B&Q Mark

Unity club collection tin Unity club

Molly Doubleday

Tom Allen

Claire Edmunds  Head Shave

Unity club fundraising event Unity club street

Anonymous

Leza Lester

MR MATTHEW R FRANCIS

Debbie Liddiatt

Heather Pople

Jess Hewitt

Lucy Miles

Somer Al Mudalal

Make happy memories with Grace.

Saisissez votre don pourMake happy memories with Grace.