Ewan's Journey

Ewan’s Story as told by mom Brenda:

“Ewan is our second child, born on 27 March 2016. Ewan was born prematurely at 36 weeks, weighing only 2.5kg. The pregnancy as well as his birth went well. Then at his 6 months routine checkup, the doctor was concerned as Ewan was not reaching general milestones and was still very floppy. The doctor asked for a MRI scan because he was also worried about Ewan’s unusual eye movements, a possible indication of epilepsy. The results of the MRI scan showed that a major part of the right side of his brain had not developed.

This was devastating news. We withdrew from our family and friends as we struggled to come to grips with the implications of this. Then weeks before Ewan’s first birthday we noticed unusual body movement when he woke up from a nap. Our Pediatrician referred us to a Pediatric Neurologist. An EEG was done and showed that Ewan is getting epileptic seizures. At 18 Months the Neurologist repeated an EEG and MRI, after which Cerebral Palsy (CP) was diagnosed in addition to the epilepsy. The lesions on Ewan’s brain indicated that he very likely had a stroke in the womb at around 20 weeks.

The quest of finding help for Ewan to develop to his maximum potential, is continuous. He is on a special diet (sugar-free, dairy-free, gluten-free and low-carb) to help keep the epilepsy under control. We give him additional supplements to keep the brain healthy, and to optimize his body and brain functions.

Over the past couple of years we did more than 200 hyperbaric dives, occasional Craniosacral therapy to aid his spasticity. Ewan also gets Physio, OT and Speech therapy on a weekly basis

He had splints for his hands and feet but we learnt that Ewans spasticity is even worse when wearing it. He went for an eye test and is wearing glasses. A good samaritan paid for a Communication Device for Ewan and we are taking Literacy classes to learn how to work the device for effective communication.

Ewan is turning 5 years old in March 2021. He is unable to sit without support, and cannot talk, crawl or walk yet. We would like to get Ewan a gravity chair - this is only made in New Zealand.

Our wish is to help Ewan reach his full potential. Our hope is to give Ewan a chance to some independence and of course to be pain free.

ONCE YOU HAVE HOPE, ANYTHING IS POSSIBLE