Callum is a happy 4-year-old boy with an infectious giggle and full of charm. He loves his toy vehicles, all things outdoors and movies. “People often see him as a disabled child, where as we see Callum as a child with disabilities.”
A moment in time that Melanie will never forget…
At 3 months old, Callum was diagnosed with a rare condition, Polymicrogyria and dysgenesis of the corpus callosum. The PGM affects both sides of Callum’s brain and as a result, he has epilepsy. He also has cerebral palsy, global development delay as well as other conditions.
Callum suffers from multiple seizure types and has trialled many anti-epileptic drugs. So far, all but one type have been controlled with the Ketogenic Diet. He currently endures Epileptic Spasms (also known as IS), each seizure is a cluster of spasms within the one event which equates to hundreds of seizures daily. CBD oil was introduced December 2017 and almost immediately Callum’s seizures reduced in frequency and intensity.
The first years of Callum’s life were spent mostly in Starship and Tauranga Hospital, with a long admission in PICU and several surgeries. Melanie found this time very difficult and she was regularly separated from her daughter Mariana. She felt like she was stuck in a jail cell and this was the toughest experience of her life, so decided to be proactive. As a devoted mother, she began to do extensive research on her sons medical conditions and any possible solutions. She came across The Brain Injured Children’s Trust and the Ian Hunter Neuro-Developmental Therapy Program. During their time in PICU, Anthony Norrie from Stillpoint Osteopaths offered to treat Callum and he mentioned the benefits of the Ian Hunter program and spoke of The Brain Injured Children’s Trust.
Our Journey with The Brain Injured Children Trust
On Christmas Eve 2015, Melanie decided to contact The Brain Injured Children’s Trust. Melanie was shocked when Debbie from The Trust called back the same day. She hadn’t meant to be in the office that day, got Melanie’s message and knew she had to respond right away. Melanie saw this as a sign and instantly went online and became part of The Trust. Melanie corresponded back and forth with The Trust until early March when Shirley Wilson came to see her and Callum in hospital, bringing a homemade patch quilt from the ladies at the office. Melanie was overwhelmed, as she said that speaking to Shirley, who also
her son with Cerebral Palsy. This was the first time she felt understood.
The Brain Injured Children’s Trust helped get Melanie involved with the Ian Hunter program. Melanie explains prior to this Callum had no muscle tone, he couldn’t lift his head or arms and everything was floppy except for his right hand, which was constantly clenched. Melanie explained Callum was missing all his milestones and was non-responsive. Melanie has found the Ian Hunter program so rewarding to be a part of, the progress that he has made is
astonishing. Since being part of the program, Callum has achieved many physical milestones such as being able to actively use his arms, head control, independently sit and commando crawl. Melanie explains the progress with Ian Hunter has been remarkable.
Callum’s mother Melanie is a strong warmhearted woman. She has found it difficult at times supporting Callum and his five-year-old sister Mariana with all of her family in her homeland, Scotland. Although the Ian Hunter program is incredible, Melanie admits there have been some hardships along the way. Melanie finds one of the most difficult parts, organising enough support and to carry out the program’s exercises when Callum is able, between seizures and cares. Melanie mostly carries out the program at home with the help of support workers, some funded by The Brain Injured Children’s Trust. She explains they are incredible with Callum, it can be heartbreaking when he resists against the exercises. However, his continued progress following the Ian Hunter program proves with hard work the results will come.
Melanie cannot put into words how grateful she is for The Brain Injured Children’s Trust, as without it she feels Callum and her family would not be coping. Melanie is delighted to say as a result of the therapies funded by The Brain Injured Children’s Trust, she has seen a lightbulb go on inside Callum and he has become far more engaging. Melanie says the future for Callum and his family has “No Limits”. She will continue to fight every day for Callum to reach his potential, he just needs a bit more help. Melanie explains she is very lucky to have the people in her life who love and support them. Callum and his sister also have an incredible relationship, they adore one another. When Callum has a seizure, Mariana will sing and stroke his head.
Melanie states without the Trust, Callum’s entire well being and cognitive ability would be behind and he would most likely have had more seizures. So, for The Brain Injured Children’s Trust, she is thankful. The Brain Injured Children’s Trust is overjoyed to support the Newman family and are delighted to have played a small part, in making their journey more manageable. We look forward to seeing what the future has in store and supporting the Newman family along the way.