Helping a Little Boy with Rare Genetic Disorder
Donation buys a sensory room to help Toby, a little boy with rare genetic disorder
Six-year-old Toby Conway has an incredibly rare genetic disorder called De Novo ZNF 292 syndrome. It is so rare, his doctors and consultants have never previously encountered a patient with this diagnosis. And Toby’s parents are unable to find any other parents in a similar situation to share their experiences.
Toby has autistic traits, speech delay and extreme hyper mobility, His abnormal brain structure primarily affects his short-term memory (so he has some educational challenges). He is physically weak and has a high risk of epilepsy.
Despite all his challenges, Toby embraces mainstream education and loves his school. His parents told us:
“Every day, he runs into school with a huge smile on his face; it’s priceless. He is honestly the most polite, infectious and caring little boy. He is a pleasure to be around for both adults and other children. His school is amazing, and we’re hugely grateful for their support.”
The Axis Foundation Trustees awarded Toby’s school (Northgate Primary School Bishop’s Stortford, Hertfordshire) £10,000 to create a sensory room. This will not only help Toby’s sensory processing disorder but will also benefit the 100 neuro-diverse pupils at the school.
Thanking the Foundation, Toby’s father Mark Conway said: “This donation will make such a huge difference to Toby and all other pupils at his school, both neurodiverse and neurotypical. His school do an amazing job with limited resources, and their new sensory room will create a safe space for the kids that will be invaluable. Thank you so, so much.”
