On the 28th April 2026, at just 21 months old, Kole was diagnosed with Sanfilippo Syndrome Type A. Sanfilippo Syndrome is a rare, life-limiting genetic disease, more commonly referred to as CHILDHOOD DEMENTIA due to the devastating downward trajectory of the diagnosis.

For the first time in history, FAYUVI, a gene therapy, has been developed and FDA-approved in America for these beautiful children. For families like ours, this is a huge moment and a chance to fight for a future we never thought was possible for Kole.

Unfortunately, FAYUVI is not yet available through the NHS here in the UK. This means our only option to secure the treatment for Kole is to fund it privately, with an extortionate £2,950,000 needed to be raised.

Fast forward six months, and Kole is now 27 months old. He is still learning, growing and making progress every single day. We are blessed that he has not yet experienced the devastating regression associated with this disease.

This is why we are fighting against time. We don’t know when Kole’s regression will begin, but we know that, as this disease progresses, the skills he loses will never be regained.

Use of Funds & Access to Treatment

All funds raised through this fundraiser will be used towards securing access to FAYUVI gene therapy treatment for Kole through any viable route, pathway or means available.

Funds may be used to cover the costs associated with accessing treatment, including the treatment itself, medical assessments, specialist consultations, investigations, travel, accommodation, legal advice and representation, and any other reasonable expenses directly related to pursuing and securing treatment for Kole.

Given the evolving treatment landscape and the urgency of Kole’s condition, we must retain the flexibility to pursue every available opportunity and pathway to access treatment, both within the UK and internationally.

If Treatment Cannot Be Accessed

If, despite exhausting every possible route, Kole is unable to access treatment, or if funds remain after treatment and associated costs have been covered, we would use those funds to support Kole’s ongoing medical needs and purposeful opportunities of togetherness and moments as a family. Alongside helping other families facing similar medical battles.

Every donation has been made in the hope of giving Kole a future. If we are unable to achieve that goal, we would want, wherever possible, for the kindness and generosity shown to him to help other families who are fighting their own battles for more time, treatment and hope.

Our commitment is to fight for Kole for as long as there is a viable path forward, while ensuring that the generosity of every supporter is treated with the care, respect and transparency it deserves.

Thank you from the bottom of our hearts for taking the time to read Kole’s story, support our journey and donate towards our fight to beat Sanfilippo Syndrome.