It’s Telethon week! The generous support of Channel 7 Telethon has made it possible for us to offer care packages that are free of charge to families where funding is either not available or additional care is needed from time to time. With Telethon’s support, we have delivered over 9,500 hours of in-home respite care to more than 70 children with life-limiting and complex conditions, free of charge since 2017.
Edward is one of those children. 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 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.