keep track of my progress on my  blog: roadto1000k.blogspot.co.uk

I'll be running 1000k this year- this will include both races and training. I'll update you when I can about races I'm doing and how I'm getting on with the distance goal. Those who know me will realise that I love running, but fitting in the miles each week with my 3 children (did we mention that Ryan doesn't sleep so well?!?!!) will be a challenge!!! But one that I'm proud to take part in. :)

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Hemiplegia is a form of cerebral palsy that is said to affect 1 in 1000 children. It affects one side of the body, and can be caused by many things. In our case, a stroke around the time of birth, caused by a blood clot detatching from the placenta and travelling to his brain is what we've been told the most likely cause is.

3 years ago I'd not heard of hemiplegia. Or even thought that babies could have strokes. We had  3yr old Natalie, Ryan had just turned 2, and Lucas was still a bump due in 6wks. Then we were sat down and told to see our doctor, and shown how Ryan holds his arm bent up by his side. 2yrs, and we'd never noticed. 2 minutes of watching him after it was pointed out, and it was so obvious. Our world was turned upside down.

8 months of doctors, physio, orthotics, lots of worry and questions (and a newborn!!) followed before Ryan had an MRI which confirmed that there was damage in his left brain, causing right hemiplegia. It was devestating to know for sure, but at least we could move forward in working out how best to help him with life ahead.

Problem was, while there were good informative resources about hemiplegia, living with it, having a child with it, support for schools, etc...... there weren't really other parents to talk to who understood what we were going through or could answer the questions that we had. At that stage, we also had the blow that Ryan had coeliac disease, and then followed months of more doctors, dietitians, adapting to going gluten free.... thankfully there were several good online support groups, I learned a lot quickly and had help when it was needed. (but that is another story for another fundraising challenge! :) )

Once things finally settled a bit, I was fortunate to find Hemi Chat. I'd seen it before, but was nervous about taking that step to contact them and join- I am so glad that I did. Hemi Chat provides a private, secure, and supportive group for parents of children with hemiplegia. Suddenly there were answers to my questions about what socks are good for under a splint, or what games are good for using 2 hands. Especially the all important- how on earth are we going to find shoes to fit over that thing, and do we we really have to buy 2 different sizes?!!?! And there were other parents who understood what it was like to have a physically shattered but mentally stimulated child, when many others just didn't get it. People I could talk to who got that a trip to the park in the morning meant staying in for the afternoon just so we didn't overdo it and struggle the next day, people who didn't look at him and say 'we'll he looks fine to me, there's nothing wrong with him', and people who I could talk to about the big scary unknown that was 'school'.

Through Hemi Chat we were introduced to CP (cerebral palsy) specific football, which Ryan adores. He's made a particular little friend, who even though we only see him a few times a year, they have such fun together. :) We've had a family day to Thomas Land, where we got to spend the day with other families like us, meet new friends and have fun on all the rides. All funded by Hemi Chat. We've been to the Thinktank with some hemi families, where we were met by our lovely patron, Paralympic legend Sascha Kindred. He's Ryan's hero, so getting to spend the day with him was amazing.

I'm raising money for Hemi Chat so these types of meets can continue to happen. Members all over the country get together for all sorts of things, and everyone always has a great time. The children get to spend time together, the adults get to have a laugh while watching our children make new friendships. When we then go online and talk, it makes things more real when you're 'speaking' to someone you've actually met. As Ryan grows, the friendships he's starting now will be important to him. He'll grow up knowing he's not the only one who wears splints, or gets tired quickly, or falls a lot, or needs a wheelchair when we go on longer walks/on the school run sometimes..... he can grumble about having to do phsyio at home and school, having to wear casts sometimes and leg braces every day (to stretch muscles), and how we're always reminding  him to use his right hand!!

Ryan will always have hemiplegia. It doesn't go away. It doesn't get 'worse', but things will change as he grows and possibly affect him more during growth spurts, or when he's ill. In the nearly 3yrs since it was first picked up it's more obvious to us than it was and his muscles are tighter than they were. But he's still our gorgeous, clever, cheeky monkey that loves life, fire engines, swimming, and tormenting his little brother and we love him loads. :) There will be a lot of questions over the years as he grows and changes from both us and Ryan, so please help us continue to have the support we have now by helping me raise funds for Hemi Chat!

Thank you in advance for your support x

Emily

follow my updates on my blog:

http://roadto1000k.blogspot.co.uk/