Benji wants to get Moving!

Meet our gorgeous son Benji who despite his tough start in life is full of smiles and giggles. After a trouble free pregnancy Benji was born strong and healthy. Still basking in the glow of being first time parents it all changed very suddenly. When he was just 23 days old Benji was admitted to the Special Care Baby Unit at Nelson Hospital following a seizure.

After five intensely stressful days with lumbar punctures, antibiotics, antiviral and anti-seizure medication Benji was diagnosed with Encephalitis — Inflammation of the brain from the cold sore virus. Benji spent three weeks in hospital receiving further antiviral medication and seemed to make a full recovery. But in the months to come we noticed Benji making odd movements which we were to discover were further seizures.

A neurologist gave us the devastating news that Benji had infantile spasms — a rare form of childhood epilepsy. Furthermore, again because of the Encephalitis Benji was left with permanent brain damage resulting in Cerebral Palsy.

At 16 months old Benji has very low muscle tone and as a result is floppy especially in his trunk area. Benji wears a Dynamic Movement Orthosis (DMO) suit which is like a compression garment. Benji has had his suit for four months and it has made a huge difference to his movement and strength and is almost able to roll over. Twice a week Benji also attends Conductive Education therapy and this combined with his suit means we have seen really positive improvements.

We would love to give Benji every opportunity to move and to always have a DMO suit. However, they are not funded and as they are made to order he will grow out of it quickly. Please help Benji to always have the use of a suit and give him a chance to reach his full potential, independence and happiness.

http://www.cewaikato.org.nz

https://www.dme.co.nz/dmo-suit