How to make a real-life super hero smile!
Oscar Ray is a 2 year old little boy with the following disabilities, a rare form of Epilepsy called ‘Lennox Gastaut Syndrome’, he has gene mutation SCN2A and also global developmental delay. Alongside this he has other complex medical needs including, Gastro-oesophageal (GORD), Early Onset Scoliosis, Cortical Visual Impairment (CVI), Ealy Onset Precocious Puberty. The main cause to all of Oscars condition is genetic. He has a gene mutation called SCN2A. Charlotte and his dad are not the carriers which makes it de novo. A spelling mistake happened within that gene and Oscar is the only one in the world to have this certain gene mutation. Rather than have a T within his SCN2A gene he has a C.
Oscar’s mum is Charlotte, she cares for him 24 hours a day. She has very minimal respite support and is devoted to her young son and caring for his needs. I thought the best way to showcase how difficult this can be was to ask Charlotte herself, in her own words she has written the following abstract,
“Being Oscars mom is the most rewarding job. The best job if you ask me. Oscar has changed my life, for the better. He has made me into the women I am today. I find my strength, the fight and courage all in him. We definitely bounce off each other. On good days I'm on top of the world, I feel like super mom, I have everything together and things run smoothly but there are times we have bad days, that's when seizures take over and during the autumn/ winter season when Oscar gets poorly constantly. The bad days affect my mental health, and I think it is important to mention this because mental health is such a huge thing and no one ever talks about it. Since having Oscar, I suffer with anxiety and got diagnosed with PTSD in February 2019. Both play up extremely bad when Oscar is poorly. Because Oscars epilepsy is life limiting, knowing I will outlive my son breaks my heart, and I cant bare to think about it but its reality and it is a hard pill to swallow. So I tend to be on edge a lot during the months of September to March. Oscar-Ray needs 24-hour care, this gets tiring depending on how bad his needs become. It is very rare he will have a night which isn't disturbed so I never get a full 8 hours sleep. He has numerous medications which he has 4 times a day I like to have a routine morning, afternoon, evening and night. Its what works best for us. He also needs physio every day, this includes stretches and postural management and he has different equipment from JCM chair (supportive seating system), standing frame, AFOs, Gaters and a sleep system. So our day never stops. And at every opportunity when Oscar had alertness we do play time and various activities depending on the level of alertness. Before Covid we would have 5 home visits every month, that would be for, his nurse, early years, vision support worker, PT and OT. And then of course he has hospital appointments. And we always make sure we get cuddle time. I know that’s his favourite.”
Charlotte went to college with my eldest cousin and is good friends with my Aunty, Megan Round. So therefore, my Aunty asked me if I could put a treat in place for Oscar. My Aunty is very supportive of what my organisation does as it is in memory of my late Uncle who passed away in a tragic motorbike accident. Immediately I wanted to help and deliver some services for Oscar for free.
As soon as I heard about Oscar’s story, I sent 2 of our look-a-like Mascots, Iggle Piggle and Upsy Daisy to visit Oscar, along with a light up toy as this is Oscar’s favourite. He was age 2 years old at that time, the purpose of the visit was for the characters to present Oscar with his first wheelchair. We asked Oscar’s mum for feedback about that visit, she said,
“As for Upsy Daisy and Iggle Piggle, they were both amazing. They were so professional and stayed in character throughout. They were absolutely spot on just like the real Upsy Daisy and Iggle Piggle. It brough smiles all round, I was filled with pride and it was an amazing way to present Oscars first wheelchair to him.”
As Oscar is growing up, I have been unable to visit myself as Charlotte and Oscar live in a flat, so I have sent my staff on my behalf. I picked my most experienced staff as I know you need a lot of empathy and patience with children with complex disabilities. As Oscar is growing up, his favourite Mascots are now Marvel characters. He also enjoys soft play and interaction with bubble tubes. Spider Man will be visiting him for his birthday next month (November, 2020). If we had the funds, I would organise some sensory sessions for Oscar as I include the video sent by Charlotte, where you can clearly see he loves bubble tubes and anything that moves and lights up. People use the term superhero in today’s society and attach it to many individuals. We provide look a like superhero’s but for me personally, Oscar is the true superhero. This is why we will continue to try and help him as much as possible and why I wish to tell his story so that he can get as many treats as possible. His small body is constantly under attack from seizures on a daily basis and I take my hat off to Charlotte for dealing with this. I am not sure I would have the strength to do so if the boot was on the other foot.