Lexie's story

Lexie's sister Tillie Mae has MPS IIIA. Here, she shares her story about what it's like growing up with a sister who has a rare disease.


Growing up


My name is Lexie and my sister Tillie Mae has MPS IIIA (Sanfilippo). She is 13 years old.


There are 16 months between us. Growing up was always fun, we are best friends. My favourite memory is when we both loved playing with our dolls. She would push me around in her dolls pushchair then tip me out. She used to really giggle when I fell out.


As she got older, she has lost many skills but always finds a reason to smile every day. She is the bravest person I know because of what she has gone through.


Raising awareness


With MPS Awareness Day approaching, I wanted to raise as much awareness as possible. I go to a new performing arts school and I just knew that everyone would get involved, so I spoke to my head of year and asked if we could wear blue accessories.


She fully supported me by allowing Year 10 to wear blue accessories and sharing what MPS is to each pupil. In form time, I was allowed to do a presentation about MPS and my sister Tillie Mae.


Everybody wore blue glitter, blue hearts, blue hair, blue shoelaces, blue socks, blue face paint and so much more. The support was incredible.


I am also part of two dance schools, Dance Beat and NCH (North Central Herts). They have been yet again incredible in supporting me and helping to raise awareness for MPS. All the students wore blue to support Tillie.


If you are inspired by Lexie's story and would like to raise awareness for MPS, please visit our Awareness Week page.