- J
- I
- S
All.
Yep. Here we go again. My once a year fundraiser for a person and family that I believe truly need to catch a break.
over the last few years people that have donated to these special wonderful families, I truley don’t think how much you made a difference. Let me tell you that everyone of you made a difference.
This is the story of H. Who is the son of one of my long time friend Leon, and his wonderful wife claire who I have known for nearly 25 years.
Here is Hs story in the words of his mom Claire
Harrison was diagnosed with Lennox Gastaut syndrome a year ago after I discovered the condition while researching ways to manage his Epilepsy that he was diagnosed with out of the blue 4 1/2 years ago. Fixing Harrison’s seizures had become my absolute obsession, all I read about day and night at every opportunity and I was not willing to accept that there wasn’t a solution to help my boys life run smoother…
When I came across Lennox Gastaut, it all made sense- there was a reason we couldn’t treat the seizures no matter how many drugs we pumped into my boy. This damn drug resistant syndrome is pretty much impossible to treat. So I put my case together for Harrison to be investigated for the condition.
So… what does it mean for that gorgeous boy of mine…
The impact of Lennox Gastaut has struck with a vengeance and the deterioration has been rapid in the last 12 months as anyone who knows H will agree.
While we have never had good control of seizures, the syndrome causes severe ‘unpredictable drop attacks’ amongst every other type of seizure that he also experiences, meaning Harrison is often injured and the facial injuries have been pretty significant. There is nothing worse than not being able to catch your child as they hit the floor during a seizure.
I used to tell Harrison there was nothing he couldn’t do and that his epilepsy was absolutely not a barrier… if he wanted to climb a tree, I would climb with him and catch him if need be… I was determined that I could create an inclusive world for him. Unfortunately, we’ve had to accept that he absolutely can not do these things and the world is suddenly full of risk and the reality is I am not strong enough to catch an ever growing 11 year old anymore.
He now has to wear a helmet when we leave the house to go on days out to protect him from significant head or face injury. He also has to wear his helmet permanently at school but I couldn’t be prouder of how he has managed that. He stood at the front of the class, explained to the children how things have changed for him and showed them his new helmet and those mates of his have been totally awesome accepting little people. ✌
He uses a wheelchair when we leave the house, for 2 reasons- the fatigue from anything upto 40 seizures a day are exhausting and his body isn’t good at managing physically and also the risk of injury is huge if we are in a busy environment full of sharp corners or hard floors to bump on.
Brain function… this has to be my most hated part of LGS!!! It has such a massive impact on cognitive function so Harrison’s memory (eg, being able to sing his favourite songs, he loves a good sing! or even remember the name of his best mate) the ability to process what we say and hold a typical 2 way conversation and the ability to recall how to do simple tasks (eg, press the right button for Netflix on the remote or know that his shirt goes under his jumper rather than over) All of the simple things we take for granted have become big challenges for Harrison.
Harrison’s memory is so impacted that lots of the learning he has previously done over the last 5 years has now been lost.
The impact of having a healthy child one day then having your world thrown upside down with the unexpected diagnosis of a medical condition is pretty gut wrenching stuff.
The truth is, as his Mom, I am scared of what the future may bring and some days I want to scream ‘I want my boy back’ and the life I knew full of football and breakdancing but I have to take a deep breath and accept the future for my boy is not going to be what I thought and although for that I am sad, he is seriously incredible, so full of strength and character and he embraces the good stuff in life so I have to absolutely do that too
Claire x
claire has a Facebook page where she shares so honestly what this beautiful family tackle each day. Head on. Nothing but massive hearts and always looking forward. ♥️
on Saturday July 22nd I will be running a marathon in my cul de sac along with my friend James Fletcher and best mate of Leon’s and mine Adam Ryder ( Adam may be running his part in England )
in addition to this before we start our run
my dad Martin Poston will be swimming 1 mile in CCC pool.
our aim collectively as a group is we raise the $10,000 by the time we start.
in addition as an added twist for every 1 mile my mom Deborah Poston does on the day I’m donating $100 for every mile she does at her own accord in addition to what’s raised . X
Adam wanted to also share the following words
“I’ve known H from the day the world blessed us with his presence, all the way through to this very day! Although his circumstances have changed some what, he has not! He is still the handsome, dancing, funny, smart, loud, brave little soldier that he has always been! He’s a credit to his parents who epitomise that strength and fighting spirit to get through whatever life throws at them! There is nothing I hate more than running and the shear fact I’m about to run for longer than I sleep for, shows how special that boy is to me! My motivation to do this comes from nothing more than my love for H! If he can deal with what he does on a daily basis and carry on his life with such spirit and tenacity, then the least I can do is put my runners on and get my arse moving! I know that I will hit some big walls during this run, but I know if it was H, he wouldn’t quit and he would keep striving with complete disregard for silly little challenges like the ones I’m going to face! H you’re an inspiration to me and I’m super proud of you. If this small thing can help you in any way, then they’ll be no stopping me! I love you H!”
so here we go again. Dig deep. Keep the faith.
H. Keep that smile big and proud pal.