Ethan and Ronin have Sanfilippo Syndrome. Without treatment, they will not live to adulthood. You can help children like Ethan & Ronin by contributing to our campaign to raise funds for research into this childhood dementia.

Ethan and Ronin are energetic and loving young boys. In 2021 they were both diagnosed with Sanfilippo Syndrome. Coming from families with no known genetic conditions, the diagnoses were particularly shocking.

Both boys are absolutely loveable 'cuddle bugs'. They just have such a happy disposition and are so sweet and caring. Ethan has very limited speech but just wants to give everyone a hug. Ronin’s superpower is his absolute conviction that he can do anything. He’s just a loveable and happy-go-lucky kid, and he has a great laugh.

The future is not what we thought, we’re at a stage where the disease hasn’t progressed, but when I look at other children with Sanfilippo, I think, that’s where our boys are going, and that will bring me to tears — all the time.

You can help

Make an online donation

Donating online is a fast, easy and safe way to donate for donors who would like to pay via credit, PayPal or Apple Pay.

Host a fundraiser

There are lots of ways you can fundraise. We have plenty of ideas for you in our A-Z of fundraising ideas & you can set up your own fundraising page here