What happened to Joshua:

Joshua is a cheery, friendly 5-year-old diagnosed with a rare genetic disorder, Bainbridge-Ropers Syndrome (BRPS). There are approximately 300 diagnosed cases around the world. 

BRPS results from a change in function of a gene called ASXL3 and is characterised by intellectual disability, autism spectrum disorder, symptoms of Global Developmental Delay (GDD), speech and language difficulties, and severe sleep disturbances among many others. This results in Joshua having challenges communicating his needs and in turn, expressing them through undesirable behaviours. Part of Joshua’s behavioural challenges include his tendency to spit saliva, throwing objects very quickly and pulling others hair when disengaged. 

The nature of Joshua’s condition has caused his parents to have major concerns regarding his behaviour at home and in school – most notably impulsive spitting and his poor sleeping patterns at night. Joshua has a tendency to be awake through the night, which is extremely exhausting for his primary caregivers, who are already experiencing caregiver burnout. Additionally, Joshua’s future is something which is constantly on their minds. 

How can you help?

Joshua’s doctors have recommended Applied Behaviour Analysis (ABA) therapy for Joshua. This specialised therapy has shown to increase language and communication skills, improving attention, focus, social skills, memory, and academics, while decreasing problem behaviours. In turn, this will help Joshua communicate better in day-to-day interactions with those he meets. 

Joshua has attended ABA therapy in December last year and the family has seen great improvements in his behaviour. However, the family were unable to continue with therapy due to their financial constraints. ABA therapy is most effective for those between 2-6 years of age. 

Till he turns 6, supports Joshua to continue  ABA Therapy, which costs $2,160 a month.

More about Joshua’s family

In September 2021, Mr Syamill was retrenched from his job. This placed the breadwinning burden solely on his wife, Mdm Cary-Anne who is employed  as a teacher. In a bid to make ends meet,  Mr Syamill worked temporarily as a delivery partner. While he has found work as a Fitness Instructor, it will take time for their finances to stabilize and even so, therapy costs would still be beyond the household’s ability to shoulder over the course of a year  

“For certain our family could never be ‘normal’, but just a glimpse of normal could make things better”, Mdm Cary-Anne, Joshua’s mother, told the caseworkers. 

The couple is determined to work toward financial sustainability, while simultaneously taking care of their children’s needs.