Eli Scott is a cheerful, intelligent, light hearted young boy with an incredible sense of humour. He stands out in a crowd with his big smile, warm eyes and cheeky chuckle. He is determined and strong, yet affectionate and caring. Eli is family orientated, being a twin and one of three coming from a large family background. He enjoys playing with his cousins, going fishing and has a love just like his father for all machinery such as cars and tractors. Eli is just like any other seven-year-old boy, the only thing that makes him different is his story.
Eli’s parents, Rhys and Annelise were admitted to hospital seven weeks prior to their due date with pre-eclampsia. Annelise shortly went into labour and delivered what she thought were two very healthy boys. Eli is a twin and it was brought to Rhys and Annelise’s attention during labour, Eli and his brother Tavita had undergone a twin-twin transfusion, in which Eli had imparted all of his oxygen rich blood onto Tavita. Eli urgently underwent two blood transfusions and was put on oxygen. He was then transferred to Starship hospital for surgery immediately.
Three and a half apprehensive months later, Rhys and Annelise were able to take their new born home. Eli had undergone three heart procedures, suffered two brain bleeds and an almost cardiac arrest. Due to his entry into the world, Eli had some developmental issues that included significant hearing loss, vision impairment and the almost certainty of a near future heart operation. As well as the haunting professional advice that Eli was likely to develop Antheoid Cerebral Palsy. Rhys and Annelise remained positive, they knew from the beginning that Eli was a fighter and felt humbled and blessed his condition had not been more detrimental.
Rhys and Annelise are lucky to come from a large family network who they relied on for comfort and support, especially in the beginning. When Eli was 18 months old they started realising he was behind with a few milestones his brother had achieved, such as crawling. A family friend of Annelise’s spoke of a home based therapy program ran by Ian Hunter that sounded promising. It wasn’t long before they reached out to Ian to learn about the Neuro-Development Therapy program he offered, in order to help their sons development. Rhys and Annelise realised this therapy was going to be financially taxing, Ian informed them about a Trust based in Tauranga he had dealt with in the past, that is able to help with funding. That is where the Scott family’s journey began with the Brain Injured Children’s Trust.
Annelise contacted Shirley Wilson at the Brain Injured Children’s Trust and instantly felt a sense of belonging. Shirley, who is the founder of the company, has undergone an incredible journey with her own son Mark and his disability. Mark who was never expected to walk, talk, or live out of home is now doing all of the above. At 23 he is flatting in Auckland, fulfilling his dream job at a Finance Company, after finishing a University degree with incredible results. Annelise explained that Mark and Shirley’s story is a beacon for a lot of families who need hope. As Shirley’s son Mark also has cerebral palsy, Annelise says whenever she calls she is always given the emotional support she needs, that is the best aspect of being part of The Trust. She explained that as a mother with such a unique situation it is so comforting being connected and speaking with other parents who are undergoing the same struggle.
Shortly after joining the Brain Injured Children’s Trust, Annelise and Rhys were granted funding to begin Ian Hunter’s home based therapy program. Eli at the time, was 20 months old, unable to sit and had an incredibly bad back extension in urgent need of correcting. Eli at this point was lying on his stomach and rolling horizontally but had not reached the crawling stage. They believed he was approximately a year behind his brother Tavita in milestones. Upon completing the first six months of the program, Eli had a massive decrease in his back and hip extension, was crawling on his stomach and trying to sit up with the help of his nada chair. Annelise and Rhys are so grateful to Ian and explain that he laid out the concrete foundation for Eli’s success. They believe if they hadn’t engaged in this program at such an early stage in Eli’s life that he wouldn’t be where he is today. Rhys explained the program was made easy to understand and was laid out to them like a building plan. Ian was able to show the basic natural developments of a baby and what the stepping stones were to get there.
Although Rhys and Annelise found Ian Hunter’s program incredibly rewarding, due to the results achieved in such a short timeframe which was a credit to the family’s dedication and hard work, they explained it was also challenging at times to say the least. The program involves several blocks of intensive exercises daily, that lead Eli to cry and writhe in pain. Rhys explained it’s important to be aware of the potential strain this program can have on your family. He explained that it can be very time and energy consuming. There were times where they wept, felt guilty and didn’t know if they were doing the right thing. Had it not been for the strength of Rhys and Annelise’s relationship, they worried the stress could have teared their family apart.
Rhys and Annelise stressed the importance of looking outside the family, to the community for help with the daily program. Initially, they had just been carrying out the exercise’s between themselves and with their family, however this had an evident emotional strain. Rhys explained their parents were very helpful, but they could see the heartbreak in their eyes as they watched their grandchild screaming in agony. It wasn’t long before Annelise put an advertisement on Facebook for volunteers. They then held a monthly meeting and created a roster for the volunteers. Rhys and Annelise both stand by this being the best way to go, they explain close friends and family are not sustainable as they have an attachment, strangers are much more effective. Although this was a lot better than close friends and family members, Annelise found having people in her home 2-3 times daily draining and she was always tied to the house. Rhys and Annelise’s relationship had began to be effected and they became stagnant. They knew it was time for a change.
After attending an information night about a new program in Wellington, Annelise and Rhys were ready to embark on a new journey. In March 2017 the Scott family decided to try the Chad Timmermans program for a fresh approach to their situation. The Timmerman’s method is more costly than Ian Hunter’s program and begins with three weeks of intensive therapy run by professionals in Adelaide, South Australia. The family all went over together to support Eli, creating fresh memories and getting the break away they all desperately needed. Annelise and Rhys found The Timmermans Method was a better fit with their lifestyle. They preferred the fact that the initial three weeks of intensive developmental therapy was performed by professionals. Clients are then given exercises to continue at home, which the Scott family are still currently undergoing.
Annelise explained the change in therapy helped improve the rut the Scott family had found themselves in. The three week block of Chad Timmermans work gave Eli so much confidence. As the exercises were initially carried out by staff members who would push Eli to the very limit, they were able to see what Eli was truly capable of. After the first three weeks, Eli had spectacular results with muscle gain and was 3-4 kilograms heavier than prior to attending the three-week course. He was able to walk with the assistance of a cane and walker and was sitting and standing independently with minimal support. Annelise started to notice a big improvement with Eli’s overall physical and mental development, not to mention the connection of the two and his overall comprehension continuously improving. Rhys explained they couldn’t have achieved these results on their own as they’re not professionals. It was all thanks to The Ian Hunter and Chad Timmerman program, not to mention the Brain Injured Children’s Trust, for providing the funding to get them there.
Annelise explains that being part of the Brain Injured Trust is just incredible. The emotional support is quite overwhelming, as there is no other networks where the people understand the struggle you are constantly overcoming. Annelise says the financial support given is life changing, she thinks if it wasn’t for the financial support of the Trust, Eli would be bound to a heavier duty wheel chair and wouldn’t be at school as yet, as he would be held back without the therapies and assets attained thanks to The Trust. She explains many things have been funded by The Brain Injured Children’s Trust. The ones that have made the biggest impact to the Scott family were all of Eli’s home therapies, the power plate that allow Eli to do his strength training daily and the family trip to Adelaide, as this brought their whole family together at such a dark time.
Eli now, age seven, is in year three and has been at school fulltime since day one. This is thanks to his home based therapies, which involve working daily on improving his muscles, which give Eli the stamina required for a busy day at school. Eli now has a spark in his eye and the motivation required to aspire to try new things such as walking and standing independently. Rhys and Anneliese are delighted with Eli’s progress not just physically, but mentally also. In the last year, Eli’s learning of speech and language has exceeded expectations, with Eli even reading in front of his class which was such a huge confidence boost for him.
The Scott family feel that the water is warm and are planning on engaging in another session with Chad Timmerman later this year. Eli is a kind, happy and brave little man who is always smiling. His future is very bright. Anneliese and Rhys are so grateful. They are confident with the support network of their family, friends and The Brain Injured Children’s Trust that Eli will continue to progress and take on any challenges that come his way.
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