In July 2022, my sister Rachael and her husband Tom received the heart-breaking news that their son, Albert, had been diagnosed with a rare genetic disorder: MPS (mucopolysaccharidosis) Type III, also known as Sanfilippo Syndrome. This devastating condition causes progressive degeneration of the central nervous system.

Children diagnosed with Sanfilippo eventually lose the skills they have gained in their short lives, such as eating, walking, and talking. They often suffer from seizures and movement disorders as the disease progresses and damages the brain.

At present, there is no cure and no approved treatment for Sanfilippo. The current life expectancy for children with this condition is between 10 and 20 years.

Since his diagnosis, Albert has been under the care of Great Ormond Street Hospital and, in April 2024, he was accepted onto a clinical trial in Hamburg, Germany. This trial requires Albert to fly out to Hamburg once a week to receive enzyme replacement drug infusions. His mum, Rachael, and dad, Tom, take it in turns to accompany him on these weekly trips. As you can imagine, this comes with significant challenges for the whole family.

It is still too early to determine the full impact of the clinical trial, but as a family we remain hopeful for our beautiful boy, Albert.

We want to do everything we can to help Albert and others suffering with this devastating disease. With this in mind, in September we (Aunty Hannah and Uncle Joe) will be taking on our second 100km walking challenge. We’ll be walking the Thames Path—a total of 62 miles (100km)—over 24 hours, starting on the 13th of September and finishing on the 14th. The following week, on the 20th of September, we’ll also be completing a Tough Mudder, a 15km run featuring more than 20 obstacles.

We are taking part in these challenges to raise vital funds for Albert. As the disease progresses, Albert requires increasing support and specialist equipment. This includes a special bed, chair, adult-sized nappies, a larger pram, and ongoing costs associated with the weekly trips to Germany for his trial.

With this in mind, the money we raise will go directly towards helping Albert live the best and most comfortable life possible, ensuring he has everything he needs to stay safe and supported.