Community Raises £5,000 to Build Garden for Boy with Metachromatic Leukodystrophy


Within the first few months after Reuben Jayce-Mills was born, he seemed to be progressing fairly normally. But when Reuben turned nine months old, his parents noticed some concerning symptoms. In particular, his right eye and foot were turning inwards. However, since doctors didn’t seem worried, his family figured there was nothing too bad going on. By just six months later, Reuben began developmentally regressing. His family began pursuing additional testing, culminating with Reuben’s diagnosis of metachromatic leukodystrophy (MLD). 

According to Express & Star, Reuben’s family recently turned to the community to help fundraise with a goal of creating a sensory garden for Reuben. Since Reuben uses a wheelchair, the family hopes to build a garden that is both wheelchair-accessible and able to bring Reuben closer to nature. 

At the time of the above article, Reuben’s family had raised £2,000 to make their dreams come true. Since then, the GoFundMe page shows that the family raised £5,000 to build this garden. Reuben, who is now five, loves being outside in nature – so the family hopes that this new garden will bring him some happiness. 

What is Metachromatic Leukodystrophy (MLD)? 

Metachromatic leukodystrophy (MLD) is a rare hereditary disorder which exists under the larger umbrella of leukodystrophy. While PSAP gene mutations may cause MLD in rare cases, the most common cause is an ARSA gene mutation. In either case, the mutated gene is inherited in an autosomal recessive pattern – meaning someone must receive one defective gene from both parents. These gene mutations prevent the body from being able to break down fats, which contain sulfatides. As the fats begin to build up, it causes myelin sheath destruction. Myelin sheath is the protective covering of neurons.

There are three main forms of metachromatic leukodystrophy, which may share common symptoms such as intellectual and motor issues, difficulty speaking and walking, changes in behavior and personality, and seizures. Additional characteristics and information regarding these three forms include:

  • Late-infantile onset. This is the most common form, with around 50% or more cases falling into this category. Symptoms, which typically appear within the first three years of life, include progressive loss of speech and muscle function.
  • Juvenile onset. This is the second most common form of MLD, accounting for 20-30% of cases. Symptoms typically appear from ages 4-14, and can include increasing difficulty in school, behavioral and cognitive issues, and loss of walking ability.
  • Adult onset. Ultimately, this is the most uncommon form and often starts after age 16. Symptoms may begin with behavioral or psychiatric difficulties, issues with work and school, hallucinations, delusions, and vision loss.
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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