Fundraising for Ewan van Rooyen – Cerebral Palsy, Epilepsy

Ewan van Rooyen

Ewan’s Story, as told by mom, Brenda van Rooyen:

“Ewan is our second child, born on 27 March 2016. As he was born prematurely at 36 weeks, he weighed only 2.5kg. The pregnancy as well as his birth went well and after 6 months we went for a routine checkup. 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.  Instead of grey matter, there was only empty space.

We were devastated by this news.  We completely withdrew from our family and friends as we struggled to come to grips with the implications of his condition. 

After six months we couldn’t bear it anymore and finally told our family and friends about our situation.

Some weeks before Ewan’s first birthday we noticed that he had unusual body movement when he woke up from a nap. After consulting with his Pediatrician, we were referred to a Pediatric Neurologist. An EEG was done and showed that he was prone to epileptic seizures. The EEG was repeated when Ewan was 18 months as well as an 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.

During the past year he underwent more than 200 hyperbaric dives and Craniosacral therapy to aid his spasticity. He has splints for his hand and feet to help keep the range of his hands and feet, and splints also work against spasticity. He also got glasses last year to remind the brain not to cut off sight pathways. 

Ewan is turning four in March 2020. He is unable to sit without support, and cannot talk, crawl or walk. 

Lately we notice that he gets frustrated easily. It is as if our inability to understand what he wants to communicate adds to his frustration, therefore he moans and cries. 

The Speech Therapist recommended him for an Alternative Communication Device. We are waiting for an assessment date but should he be approved, we really would like to get this for him to enable us to understand him better. 

We are a family of four. My husband is the sole provider as I stay home and take care of Ewan and his older brother, Ruan (7), who is now starting his school education. I do Ewan’s daily therapy with him at home and take him to Physio, OT and Speech therapy on a weekly basis.  

By supporting our fundraiser you will enable our little warrior to speak his mind and helping a mommy and daddy maybe hearing the words “i love you” for the first time. Our wish is to help Ewan reach his full potential. We sincerely hope that this device will make it easier for him to express his needs, and any other donations would tremendously helps us with his weekly special meals, supplements and therapy.”

ONCE YOU HAVE HOPE, ANYTHING IS POSSIBLE

Join the Group Ewan`s journey on Facebook for live updates on his progress and journey.

Fundraising for Ewan van Rooyen

Journey of Hope Bracelets © Arms of Mercy NPC

Journey of Hope Bracelets; consisting of silver, gold or duty pink wooden beads with crystals – and a Love with Cut-out Tree Heart, Hope with small Cross, or Little Hand charm. To place and order, contact the agent in your area or shop online. Alternatively, please consider a donation; any and all donations welcome.

“It’s part of life’s journey to face difficult times, but we must never lose the light of Hope.”

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