In March this year, we received the devastating news that Wilf—our cheeky, gorgeous, joyful boy—has a terminal illness.

Batten disease means that Wilf will gradually lose all of his mobility and vision. The disease typically has a life expectancy of around 8-10 years. (You can find out more from the BDFA )

Our lives, our daughters’, and our extended family’s—have been turned upside down over the past few months. Life will never be the same. However, we are gathering every bit of strength to make Wilf’s life as joyful and comfortable as possible, complete with all the toy cars he could wish for.

We never thought we would share our lives so publicly, but we are beyond grateful for any support. Some people have kindly asked how they can help, and so we thought having a central place for ongoing fundraising might be useful. We will need to adapt our home and purchase equipment as Wilf’s needs change, in addition to covering the costs of making special memories—and, of course, the less exciting things like hospital parking and the chocolate bars after difficult appointments.

Wilf has been fortunate to receive approval for Brineura infusions, which we hope will extend his quality of life for as long as possible. These infusions, delivered every two weeks, provide a synthetic version of the enzyme he is missing, administered directly into his brain. NICE is currently negotiating the use of this drug, and we’ll be campaigning to ensure future children can access it too.

The kindness of those around us in recent months has completely overwhelmed us. We will be forever grateful to everyone who has surrounded us with love—those who’ve sent food, memes, and distractions, hugged us, wiped our tears, and done everything they can to make our beautiful boy smile.