In celebration of World Cerebral Palsy Day on October 6th, we are revisiting Edward’s Story, which we first shared in 2021. World Cerebral Palsy Day is about raising awareness, challenging misconceptions, and celebrating the lives and achievements of individuals with cerebral palsy. Edward’s journey is one filled with resilience, growth, and a daily demonstration of courage. We are excited to update you on Edward’s life, what his week looks like at six years old, and how his family continues to walk this path with love and hope.
Edward’s life in 2021 (Jump to Edward’s 2024 update here.)
We met Edward and his family back in 2019 and have been privileged to watch him grow and develop over the last couple of years. We spoke to Edward’s mum Genevieve, in 2021 to get a glimpse into life with Edward.
Tell me a bit about Edward – what kind of medical conditions is he living with and what does that mean when it comes to looking after him?
Edward is a 3-year-old little boy and is a twin. He was diagnosed with Spastic Quadriplegic Cerebral Palsy at 6 months of age, which is due to a brain injury he acquired during pregnancy at 25 weeks. The boys had TAPS (Twin Anaemic Polycythemic Sequence) and Edward unfortunately drew the shorter straw and was the donor in this situation.
Edward is unable to move unassisted, which means he can’t walk, crawl, stand or sit independently. He needs help in all aspect of his life 24/7. Edward also has some form of anxiety around separation which contributes to challenges when caring for Edward. Edward also needs help with feeding and is a terrible sleeper due to his excessive tone and dystonia.
When was he diagnosed? How did you (and your family) feel when he was diagnosed?
Edward officially received his CP diagnosis from the hospital at around 6 months of age following an MRI scan but we always knew he was a little different from his twin. He was very irritable and stiff in comparison so we took him to a paediatrician at around 4 months who correctly diagnosed him with a brain injury. We felt devastated and lost. It felt like our world had suddenly flipped 180 degrees. There was a lot of emotional trauma as we initially thought we would have lost Edward during pregnancy but then he made it through the ordeal, however, with so many complications. A part of me wished he didn’t have to deal with this diagnosis.
What does a usual week in Edward’s life look like?
Edward attends 4 to 5 therapy sessions a week including Physiotherapy, Occupational Therapy and Speech Pathology sessions with our lovely community team. Edward also enjoys Hydrotherapy sessions as well as block intensive programs. All these sessions are aimed at improving function during his early years. Over the weekend, our family likes to explore new places and parks. Edward also adores his support worker Tina, who supports him 3 days a week at home. Whenever Tina is around, she helps apply therapist prescribed activities and incorporates lots of fun and games in between to keep Edward entertained and moving.
How long did Edward receive support through Telethon funding? When was that?
Edward was first referred to Hannah’s House in early 2019 after a social worker at Perth Children’s Hospital saw the need for help. We received free-of-charge support for a good 4 to 5 months initially (from Feb 2019 June 2019) and an additional 8 weeks towards the end of the year.
How has Hannah’s House made a difference in yours and Edward’s life?
I wasn’t even aware of such a service when I first got Edward’s diagnosis. When our first support worker Karen arrived, she helped our family so much and gave our family much-needed respite, especially as Howard was working as a FIFO engineer. Our current support worker, Tina, is such a valuable addition to our team of support as she goes above and beyond in ensuring Edward is well cared for while I devote time for Ethan and other members of the family. Tina has also actively worked on easing Edward’s anxiety when he is away from me and helped us with appointments and hospital visits.
Hannah’s house also regularly organises activities that allows other parents of special needs children to get together, relax and socialise. I think it is very important as caring for a SN child can be quite daunting and isolating for many. They also have extremely thoughtful coordinators that touch base with families regularly to make sure everyone is well looked after.
What do you and Edward think of our Playtime Playgroups?
We absolutely enjoy all the events we attend. We are unable to regularly attend playgroups due to therapies and appointments here and there but when we do attend, we have a blast and it is amazing that family members are always included.
Here’s what Edward is up to in 2024
Since we last shared Edward’s story, so much has changed for him and his family. Now six years old, Edward’s life looks very different as he continues to grow and navigate new challenges. He is thriving in school, developing new interests, and experiencing moments of joy alongside his brother and friends. His routine is packed with school, therapy, and time outdoors, but it also includes new hurdles that he and his family face with determination
At age 6, what does a usual week in Edward’s life look like?
Edward is now 6 and a bit and his routine is looking a lot more different from what it was a few years ago. Edward is now in Year 1 at an amazing and inclusive school, together with his twin brother Ethan. He goes to school full time now and still has his important therapy sessions mixed in to improve and maintain his function and mobility. He sees his physiotherapist, speech therapist and occupational therapist in school weekly and when he comes home, he spends an hour in his stander, watching his brother and the neighbours play basketball in our driveway every day. He also spends an hour in his walker, walking up and down the street and interacting with our neighbours. Edward enjoys going out for walks with family and support workers although he does dislike shopping with passion. Edward also participates in intensive programs twice a year at The Healthy Strides Foundation, which has helped him both socially and functionally.
Does Edward have any interests or passions he enjoys engaging with?
Figuring out what Edward likes is very tricky as he does not verbally express his likes and dislikes. He loves being outside with his brother and watching him play with our neighbours. He loves engaging with the kids when they come over and play and we spend hours outside just playing with them. He enjoys some of his books (Hairy Maclary series) and he also enjoys finding new spots for good food. Whilst we struggle with mealtimes at home, Edward is a completely different person when we eat out. He is definitely a food connoisseur. At school, he has taken a liking for music therapy and loves taking his little classmates to these sessions with him.
What hopes or goals do you have for Edward’s future, and how does your role as his primary carer play into that vision?
I think as his mum and primary carer, I walk this journey with Edward a day at a time. It is manageable at best and can be extremely overwhelming when things pop up all of the sudden. Since our last feature, Edward started having seizures and they are still very scary for us. Edward also had his PEG inserted earlier this year to help with medication and fluid intake. This has made things a little more “technical” and “medical”. I fear for the unknown and the future because we have absolutely no control and sometimes, this makes life a little more interesting. When we travel, we just ride along with him and pray that nothing happens but there is no way for us to plan into the future. My only wish is for Edward to be happy and healthy, which is already challenging for us. As parents, we want the best for our children but for kids with disabilities, it is very very very hard to know what is best for them. Edward will continue to face challenges and adversities throughout his life as he has a different ability, and I hope that he has the resilience to overcome each of them as they come.
If you could give advice to other parents who are starting out in a caring role for a child with Cerebral Palsy, what would you tell them?
No matter where you are in this journey, it is going to be hard. When I first got handed the diagnosis, our family did not have the time to process the grieve and the loss that we suffered and that took its toll over the first 3 years of our journey. I think I would love to tell the Genevieve 6 years ago to slow down and process all the emotions that came with the diagnosis. In addition, I would also like to say that having a village of family and friends that truly understand and appreciate the challenge is extremely helpful because they will carry you through the hardest of times. I found my village (and am constantly searching) over the last few years and it has helped me emotionally and physically so it is pertinent to find people that can help you. I have also found friends that are in similar journeys that have helped with overcoming barriers with school, therapists and the NDIS.
Lastly, I would also like to tell new parents in this journey that it is not a sprint, it’s not a 1500m race, it is a ultra marathon. One day at a time. Soak in the good days and push through the bads. There will always be bad days, there will always be days where you wished life is different and cannot help but feel that everything is just unfair, but this journey gives a different perspective in life, just like the Camino De Santiago walk, it maybe be tough but it allows you to view this journey different. For us, there is always “what is going to happen tomorrow?” I am still learning how to manage the paralysing fear that comes with the unknown, like each time Edward has a hip surveillance appointment, I feel I can’t breathe while waiting for results but after all these years of preparing and aware of what is coming, I believe that we are braver and able to cope with the rising challenges as they come.
Edward’s journey, like so many others living with cerebral palsy, is one of strength and perseverance. His story sheds light on both the triumphs and the ongoing challenges faced by children and families living with complex needs. As we raise awareness for World Cerebral Palsy Day, we invite you to support families like Edward’s by sharing his story or donating.
Your generosity helps ensure that children with different abilities receive the care, therapy, and opportunities they deserve to live fulfilling lives.
If you’d like to donate to create joy for families like Edward’s, head to www.hannahshouse.org.au/donate
