My son Dante was diagnosed with Arnold–Chiari malformation when he was two. He was two and a half when he had decompression surgery at Christchurch Hospital in 2007. He developed surgical meningitis after the surgery and he was sick for six months. The Chiari malformation has left Dante developmentally delayed. He is behind in his speech for his age and has had speech therapy for a year.

One of our main concerns was that Dante would struggle to have a normal life. Soon after his surgery there were a lot of things he could not do. Playing sport would be restricted for him and he would be limited in doing many things other kids do, which is going to be hard for him. Being hit in the head is a constant worry. He had poor balance and learning problems. He could not ride a normal bike but in the early years he had a trike that was specially made for him. He needed help dressing and getting down steps, so every day was a struggle for Dante.

Here is Dante in the High Dependency Unit attached to a heart monitor (left), and after surgery with 24 stitches at the base of his head (right).

At age 5 Dante started school at Waipara School and has settled in well. He has a teacher aid with his learning tasks. He enjoys school and has made friends there. His favourite activity is story writing.

In 2011 Waipara school organised a dress-up day and dedicated the fundraising efforts to the NZ Organisation for Rare Disorders, in honour of Dante. This was a proud moment for us as it showed that Dante was accepted and welcome as a valued member of the school community.

Dante has gone up levels for his reading at school. His speech has improved and in fact has developed better than we expected. He loves fishing and animals. He still needs help at school, but he enjoys his life even though he has his bad days when he gets headaches and bad balance.

The next two photos show Dante at age four.

Dante still has regular checkups with the neurologist.

If you have a young child with this condition, please feel free to get in touch to share experiences about its impact on our lives. Late in 2010 we had the first contact from another young mum with a baby with this condition. This was our first contact with another affected NZ family.

Debbie Searles