Hi everyone

March is starting soon and I wanted to let you know about something we're doing to support the MPS society.

Lilia is 10 and has Sanfilippo Syndrome Type B (MPS IIIB), a rare terminal genetic condition. It causes progressive damage to the brain and body, so over time she has lost a lot of the skills she once had - like speaking, running, climbing and managing basic things on her own. We deal with hyperactivity and other health issues, sleep that's all over the place (often only a few hours at night) and as things progress she will have more problems with her mobility, eating, airways, seizures etc. It is exhausting and heartbreaking but we focus on the routines and moments that keep her comfortable and happy.

The MPS Society has been a massive help since her diagnosis in 2021 from giving us practical advice on getting the right support from schools and health teams, organising events for us to attend and connecting us to other families to pushing for better awareness and resources for these rare conditions. They have made a difference to our family when things felt overwhelming.

This March, we are taking part in their Step into Spring Challenge. The plan is to do one mile a day where Lilia will either walk or go on her trike, whatever works for her that day. It's a positive way for us to keep her active while fundraising for the MPS society.

All donations go towards helping other families with MPS and other rare conditions - through support and advocacy, events and just knowing that you're not on your own. Every small amount helps or just share the link if you can't donate.

Thanks for reading this and for any support. It really does mean a lot to us.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.