This is our son Ethan. He seems like a normal healthy 2 year old on first glance; smiley, cheeky, adorable. Then you may notice he bumshuffles everywhere. He holds his left arm at a weird angle. He drags his left leg when bumshuffling. Thats because he has hemiplegia a form of cerebral palsy which affects the left side of his body.
What you won't spot is the scar under his hair line from having brain surgery called an ETV to drain fluid from the ventricles in the brain because he has obstructive hydrocephlus (water on the brain).
Ethan also has an inoperable brain tumour and a condition called heterotopia (which is where the brain has formed incorrectly and parts of his brain are not in the "right place".) And what his latest MRI uncovered was a brain stem not fully formed.
So while he is smiley and cheeky and adorable. He is so much more. He is a fighter and so are we.
We recently moved house to accomodate his growing needs. Ethan uses a standing frame to build up his muscles. He also uses a therapy bench to weight bear and attempt to kneel. A specialist highchair is on order to give extra support to his pelvis and core muscles. My point: He will need more and more equipment as he grows to support him. At this point in time we have no idea if he will ever walk or use his left arm.
So we are doing what we can to raise money for Ethan to create a safe space for him to play in. Our first mission is to make our garden disabled friendly and any money left over will go towards making our conservatory a more usuable space all year round with a new roof and softer flooring.
We know our target is high and to raise money we are doing lots of things throughout the year to try and achieve this;
· We are hosting "girls/lads night in" and "coffee mornings" throughout the year
· Nick and I are running in the September 5K Birmingham Fun Run and Ethan will be right there with us.
· We are also taking part in the 5.5km Coventry SkyRide
· In October I will be swimming 2.5K to raise awareness of hydrocephalus and for 100m Ethan will "swim" with me.
If you could please donate what you can that would be greatly appreciated. Thank you.