Members Stories

Lily

About me

Lily is a loving and highly social young 9-year-old girl. She has a vibrant energy about her that is contagious. She is affectionate, loving kisses and cuddles from those around her and it is clear to see she is a very happy and content child. Lily loves to explore anything and everything, having a naturally inquisitive nature. She loves most things that any developing child takes a shine to including swimming, reading and the outdoors. She lives at home with her dad Stuart and mum Ennice.

She also has an older sister named Dawn and an older brother Caleb, who love her unconditionally. Lily is quick to greet guests with a big hug and loves to spell out their names in sign language. Lily is a clever girl with an amazing set of skills, although some differ from those in her age group, due to a brain injury that she developed shortly after birth.

Lily’s early beginings…

Lily was born perfectly healthy, however at 5 days old, her mother Ennice could tell something wasn’t right. Ennice contacted the hospital about Lily’s condition who were not convinced anything was wrong and therefore failed to provide the urgently needed medical care.  As the issue continued, Ennice soon took Lily into hospital, however it was too late. The pain in Lily’s stomach was due to a perforated intestine, which had turned into secondary sepsis. Sepsis is the body’s often deadly response from an infection, one third of people who develop sepsis die and those who do not are often left with life-changing effects. Kernicterus was also diagnosed which was a result of high levels of bilirubin in her blood. Lucky for Lily and her family, she survived. However, due to her condition not being promptly tended to, she suffered a brain injury leading to the development of Kernicterus with Dystonic cerebral palsy, global learning difficulties and profound bilateral hearing loss with cochlear implants. Lily was admitted into neonatal intense care unit (NICU) for about two months following this. Tests run during this time identified that she was not meeting her milestones and that Lily was actually going backwards in her development. This is where Lily and her family’s journey began.

Lily

Our Journey of challenges, growth and development…

Lily has an appearance of wellness as there is nothing visually different about her. However, Lily’s has a profound diffuse brain injury which affects her visual, auditory and tactile abilities. This has impeded her mobility, language and manual abilities. Lily’s brain struggles to organize itself to enable functional coordination. Her inability to coordinate makes things such as properly dressing herself a challenge. Lily’s auditory nerve and some of her speech pathways were damaged affecting her ability to speak. Lily is non-verbal, although she is currently attempting to make sounds and converse. Ennice and Lily have been learning sign language to help her communicate. Lily also uses Augmentative and Alternative communication (AAC) which encompasses communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language.  Lily has ACC cover as her condition could have been fully avoided if she had received prompt care. ACC provide carer support hours which are used to employ support workers to help with Lily. Currently Lily has access to two support workers who provide assistance with the therapy program and Sign language. Limka and Judy are valuable and indispensable members of Lily’s team. Lily’s family and support team are driven to help Lily succeed in any way she can. Ennice studied sign language and deaf identity, culture and community to better understand Lily’s deaf worldview.

The family’s first encounter with The Brain Injured Children Trust was February 2020, so they are able to provide a recent point of view from their experience. Ennice explained the easiest way to describe the Brain Injured Children Trust is just so much love. Ennice was overwhelmed that this amazing group even existed, she didn’t believe that a group this niche and selfless was even real. She said the emotional support is definitely the best part. As a parent of a brain injured child you can often get tired of explaining yourself or your child’s and family’s needs, however, when Ennice rang The Trust she said Karen, The Brain Injured Children Trust’s administrator, was finishing her sentences and she knew somebody finally got it. Ennice loves the fact that any time you need support somebody is there. The Brain Injured Children Trust helped Ennice with funding, support, equipment and introduced her to Ian Hunter and his Neuro-Development Therapy program for which she is so thankful. “They just get it,”

Prior to finding The Brain Injured Children Trust, Lily and her family have been through an incredible journey. After Lily was released from the neonatal care unit, they began a lot of different types of therapy right away. They had done a lot of work with the Ministry of Health. When Lily was 3, ACC accepted the claim and agreed to fund all of Lily’s injury needs.  They worked with physio, occupational and speech language therapists, before getting pointed in the direction of Conductive Education. Ennice said that when Lily was transitioned into Glowkids Conductive Education in Sandringham Auckland, around three years of age, it was such a blessing. Ennice explains that conductive education is different to other programs such as the Ian Hunter program. Having attended the parent course at the “Institutes for the Development of Human Potential” helped me appreciate and develop a deeper understanding of Lily’s injury and also the purpose of the different exercises.  At Glowkids, parents and their child would all come together and be shown exercises to do, and work in a group alongside a conductor who prepared different group and individual activities, which helped with motivation and accountability. Ennice explained that she really enjoyed the social aspect. The time at Glowkids proved beneficial as Lily learnt to walk, creep and develop better coordination. The focus and implementation of the 3 therapy models are complimentary but very different.

Round July 2019, somebody gave Ennice a book called “What to do about your Brain Injured Child” by Glenn Doman. This book is what inspired Ennice to take an American parenting course in Philadelphia. Ennice flew over for five days to fulfill the parenting course in December 2019. Returning to Philadelphia in January 2020 with her husband and Lily for three days to get an assessment done. Ennice said these trips were definitely not holidays, the days were long and intense, but it gave her a better understanding of Lily’s condition and what could be done. Ennice visited the Cerebral Palsy Society and spoke to Gemma about the therapy program she was going to do with Lily. Gemma mentioned the Brain Injured Children’s Trust. Ennice had been given a long list of equipment she would need for Lily’s condition and had begun to feel hopeless. Gemma from The Cerebral Palsy Society mentioned that The Brain Injured Children Trust (BICT) may be able to help with funding. So, she took a leap of faith and got in contact with them. 

Ennice explained that when she contacted The Trust, she was in a really bad place mentally and The Trust made her feel at peace. Ennice said that there is so much pressure on you when you have a brain injured child, as you think you are never doing enough. When she got in touch with The Brain Injured Children Trust, she felt that weight was lifted as they were able to reassure her, she was doing everything she could and more. Not only was The Brain Injured Children Trust able to help with providing funding for equipment vital to Lily’s progression. More importantly the BICT provided much needed emotional support and encouragement. They made the difference with the family continuing with the program by providing a community that we could belong to. Ennice said that it made her feel that she was not insane to embark on this journey, or at least that they were also just as insane. They also recommended Ian Hunter’s Neuro-Development Therapy program. This appealed to Ennice as Ian Hunter had trained in the Glenn Doman Method also

Ennice was overjoyed to find the Ian Hunter program. She explained that Ian is so kind and makes it easy for the parents. Although Lily has only been doing this program for six months, compared to other programs she had done, Ian’s program was the best fit as it was doable and easier to fit into her day. Ennice likes the fact it can be done at home, in a few hours and gotten out of the way to enable her and Lily to move onto other things, compared with others where you need to drive to a facility. Lily had been doing different exercises with physiotherapists and conductive therapy from a young age, the transition was slightly easier as it mirrored certain exercises in the program. The combination of Ian’s guidance and Ennice’s 5-day parenting course in Philadelphia, enabled better understanding of what they were doing and why. Ennice explains she now understands the therapy they are doing is all about brain organisation. If Lily’s brain can develop better organisation then there will be a flow on effect to her speech and co-ordination which is the goal. The thrill is that the program is user friendly and enables the development of a workable routine.

The Ian Hunter program, like any other therapy, does come with its challenges.  It is important for other parents to know it is far more achievable with support. When Ennice began the program, she was trying to do the exercises with Lily alone. She explains this wasn’t sustainable. Ennice burnt out after a couple of short months and had to send Lily to a friend’s house for two weeks to gain her energy back. After this experience, Ennice turned to a trained professional and hired a qualified preschool teacher to come in and help with the exercises from the program. Ennice said she was really lovely, although it was frustrating at times as she had to constantly explain what they were doing and why. As this person was trained in early childhood, at times she would think she knew better and attempt to challenge the program. This became exhausting and she quickly realized that she needed someone who is teachable. 

Now Ennice and Lily have a routine where on Monday and Friday their close neighbor Judy comes in to help with the exercises. Tuesday, Wednesday and Thursday Lily’s support worker Limka comes to help Ennice do the program. Ennice explained that this routine works really well. Ennice has found that working in pairs really helps as you are able to draw energy from one another and motivate Lily to keep going. She finds two people are able to achieve in two hours what she would be able to do alone in three. Having said that, Ennice explains it is really important to take into consideration how Lily is feeling. They will take breaks throughout the exercises and if Lily is really not cooperating, they will leave it for that day. Another thing that Ennice finds important is getting time to yourself. She is lucky to have her daughter Dawn working for her sometimes in the mornings. Dawn does some cleaning around the house and looks after Lily, while Ennice is able to escape for a much-deserved walk to rejuvenate. 

As Lily and Ennice have only being doing the Ian Hunter program for six months she says Lily is in a similar stage as she was prior, however, there has been some large improvements. Ennice and Lily have really been working on cross patterning to reorganize Lily’s brain in order to help with her speech and coordination. Ennice realized that Lily had never learned to crawl and had just gone straight into walking which is a problem as it stops that progression of coordination. Since beginning with the program, Lily is now able to crawl without her slide, which she was never able to do. She is also attempting to vocalize and pronounce words she could not previously. The family is thrilled as Lily seems a lot more responsive and engaged than she was prior to The Ian Hunter Program. Family and friends who have not seen her since the beginning of the program have told them that Lily seems a lot more mentally present and mature. Lily is now more inquisitive and present, there are very high hopes for the future with the help of this program for Lily. The family explained how they have found their feet with the best way to execute it. They can now see it being part of Lily’s lives for years to come. 

Lily’s family are so grateful to have found The Brain Injured Children Trust and feel it is such a blessing in their lives. Explaining that before reaching out to The Trust they were ready to give up. When Ennice met Shirley from The Trust, (who has had her own journey with her son Mark who has cerebral palsy) she was in a dark place. The opportunity to speak with somebody who understood and encouraged her really helped her find her feet. After speaking with Shirley for the first time, within weeks she had organized for a ladder, to help with Lily’s development to be made and delivered to their home free of charge. Shirley also personally brought over a patterning table and a slide when she came to visit. The family experienced that being part of BICT is like having old friends on your side that understand exactly what you are going through. Ennice said they would still be very stressed and in that dark place if they had not found The Trust to help guide and provide support.

 Lily and her family have high hopes for the future. Due to the way Ian Hunter’s Neuro-Development Program is structured, the next step is to get Lily into school this year (2021) while being able to continue with Ian’s program at home and also include elements of it within the school day. Ian has been really encouraging for Lily to attend a mainstream school. He believes this will provide positive peer modeling for Lily. Although there are still a few options in the works, they are hoping to get Lily in for some half days at a local school nearby. This will also enable Ennice to gain some independence back and she is looking forward to returning to university to finish her sign language studies. As Lily has been vocalizing a lot more since being on Ian Hunter’s program, Ennice is optimistic that by continuing with it, Lily’s speech will continue to improve. Lily’s has an excellent family who are dedicated to making sure they are doing everything within their power to help Lily succeed. Having said that, the family is at peace with the progress that Lily has made. As a proud Christian family, they have faith that God has a plan for Lily’s life and will guide them along the way. They are so grateful to The Trust for helping them get to where they are now. It takes a village to raise a child and Lily is fortunate to have a fantastic one. The Brain Injured Children Trust feel privileged to play a small part of that village, now and for years to come. 

Lily has started the year and is attending Pukekohe East School. She is in a class alongside peers of the same age. The school team, principal, teachers, and classmates have gone above the call of duty to welcome and embrace Lily in support of her integration. Lily loves school and is managing full days. She is so excited to get to school in the morning and has lots of stories to share at the end of the day. She has a full-time ACC funded teacher aide who also provides NZSL support. Stuart and Ennice are so thankful for Ian’s recommendation as they would not have considered mainstream school as an option beforehand. They are delighted at how well Lily is settling in and being supported.