Updated: May 2, 2019
This first post could go on forever but I will try to summarise… I’m sure I will come back to more details in future posts. Just over 9 years ago on 20th March 2010 my gorgeous 7 year old son, George, was blue lighted up to A&E with all the signs of a stroke. He had gone to bed a normal boy and now couldn’t move his right hand side, had a lop sided smile and couldn’t speak… We really thought we were going to lose him.
Thankfully we didn’t lose George that morning but we did lose a big part of him, and many hopes and dreams for him. Soon, epilepsy took a hold over him and has been incredibly hard to control since. Over the last 9 years our lives have changed in ways we could never have expected and George is now at a wonderful specialist school, is on a cocktail of anti-epileptic medications, and has recently had more surgery to implant a VNS device - a last chance to gain some control over this horrible illness. Unfortunately he still suffers regular seizures and faces a challenging adulthood.
George has had numerous hospital admissions, some for routine testing and some emergency admissions. Last June we spent 2 weeks in Great Ormond Street Hospital when he had invasive testing to see if brain surgery was possible. During this time George had two brain operations and then days of inducing seizures to see if they could find out the origin of his epilepsy. Unfortunately what we found out is that the epilepsy is too deep rooted and spread out for him to be a surgical candidate but they did try a new technique called thermocoagulation which gave a slight reprieve from the most severe tonic clonic seizures. On the journey George has also been on steroids, immunosuppressants and has developed various illnesses including measles due to his low immunity. He has had times where he struggles to talk, see properly, and cognitively he has declined over the years.
Thankfully, through all this we have had the support of Shooting Star Children’s Hospices. This amazing charity has given the whole family respite and the most fantastic memories. We have had counselling, holistic therapies, days out and most importantly, respite care for George. It is now time for us to give something back and over the next 12 months leading up to the ten-year anniversary we want to fundraise as much as possible for this charity.
We would appreciate any support you can give. I know everyone has charities close to their heart but if there is anything you can do from sponsoring me or my friends for one of our challenges, to turning up to an event or donating prizes for the raffles and auctions we would appreciate it so so much.
Please see the video clip for more about what Shooting Star has done for us and this link to show how they support families in our area.