Well where do i start......

I meet Ed in 1999, whilst out clubbing in Swindon. From the get go we were inseparable. From day 1 I knew he had a unique walk and after a month I got the confidence to ask what was wrong with his legs. He told me he had Becker muscular dystrophy, and to be honest I had no clue as to what that was. I guess I thought it might be something that went away after a little treatment. So thinking this I carried on with our relationship, going out and enjoying ourselves and living like a new couple and partying most weekends. To be honest I don’t think Ed knew too much about his condition, if he did he didn’t say much. Whilst searching the web I found that there was a muscular dystrophy seminar and info day happening, so I put our names down to attend (and also put Eds brother down who suffers from beckers too).

I was a little nervous about attending the seminar, because why would they have a seminar about something that could go away! On arrival it hit me. The other men there suffering from this condition had Eds unique walk or in wheelchairs unable to walk. I was very shocked. It was a lot to take in on that day. A lot of info thrown at me (and everyone else) That day I learnt that ed wouldn’t get better, but gradually worse! My heart sunk, because I had fallen for Ed. I cried there and then, although I may have hidden it.

From that day I tried to research BMD as much as I could, at the time I didn’t have the internet, so my resource wasn’t so good, and Ed didn’t now an awful lot.

Before i knew it days were turned into weeks then years, Eds condition didn’t seem any worse to me, because i saw him everyday. Although looking back now I was probably in denial. My mum was worried for the future and what that might hold. I tried to keep mum and dad in the loop as much as I could.

I knew Ed hadn’t seen his doc for years so I got the ball rolling again. I sent him to see our doc for a referral. He soon got a letter from his doc in Oxford.

So we went to see his doc in oxford. Again it hit me hard what the doc said. But I knew I was in for the long hail and loved Ed no matter what.

I also tried to get Ed things he was entitled to, like a blue badge which made his life so much easier being able to park closer to where he needs to be. We also got things moving for him to get his DLA, which he was first refused, almost stating he wasn’t disabled enough!!!! Finally he got it though and uses it as motability.

We went on to move in together then got married in 2003.

In 2004 we bought a house and 2006 had our first child, a little girl called Aaliyah.

By this time I could tell Eds legs had got worse. He fell alot for no reason. And wouldn’t hold our baby unless he was sitting down, worried he might suddenly fall. He couldn’t even push her in her pushchair because of his walking. That was all pretty heartbreaking. Simple things we do everyday seemed to be a struggle, but he found his way around it and did the best he could.

As we found out from Eds doc as oxford that its best to have a heart check as the heart is a muscle, and could be affected. So he was sent for a ECG and other checks. A few wks later he received his letter from the hospital and to be honest it was full of big words that only doctors understood!!! So we called his doctor to try and explain their findings. They told Ed that he had dilated cardiomyopathy. Which in lamens terms his heart doesnt pump properly! They put him straight on heart medication to help, which he needs to take for the rest of his life.

By 2010 I could really tell Ed was struggling with the stairs, and his walking had got really slow. So after a trip to the doctor he was assigned a occupational therapist. She came and assessed Ed and his needs. She said in the future Ed would need a stair lift, wet room and wheel chair access. But Ed didn’t feel he needed any of the big things so had hand rails put in to help him at that point.

Around this time we found out we were expecting our second baby and the scan showed it was a girl. Aimee arrived safe and we were both very happy with our little family. Again Ed adapted his way of doing things.

At one of his M.O.Ts (oxford doc appointments) he told the doc that we had 2 daughters and the doc asked if we had been offered genetic counselling, which we hadn’t. So I asked what that was. The doc stated we could have had genetics to stop Ed passing on his faulty X chromosome, thus preventing us having girls. He explained all the genetic makeup and X Y chromosome and it hit me that our girls were carriers of this faulty gene. He went on the state that they could have traits of Beckers and would need heart checks. My initial thought was ‘WHY’ , ‘WHY’ was this happening. Why us, Why were we not given advice at my first pregnancy? We could have done something. But that something didn’t bare thinking about.

My head was spinning from all this info. My girls could have traits of this disease. That night I broke down. Watching Ed ‘waste away’ in front of me, knowing our girls might have traits, they would also need genetic counselling if they wanted to start a family and would probably need IVF type help so if they had boys, they wouldn’t get the faulty X chromosome. I cried myself to sleep that night.

So that’s it, brief I know. I have learned how to ‘fight’ for my family. Eds condition isn’t going away, and he will be in a wheelchair in his 40s. My girls are carriers and will need tests later in life. But I wouldn’t change anything. I LOVE them unconditionally and will do all I can for their cause. So Skydive 2016 here I come.....