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Hi all, some may remember this some may not, I've had 2 donations from previous donors... Thanks guys,

Basically the long and short of it is in running the Windsor half marathon for charity.

My just giving is in my footer below...

I've attached taylans story below so it's for a great cause...



Taylans story
Taylan always complained of leg pain, 1/2 an hour running around in crazy kids and he'd be crying in agony, I took him to see our GP when he was 3 years old, he told me that it was because Taylan tip toed a lot and that he would refer him to a paediatrician.

We were referred to Dr Tuite at Broomfield, he said that the pain was because of Taylan tip toeing, he told me he wanted to put both of taylans legs in plasters, and that his his feet would have to be pushed upwards while the plasters set so this would stretch his tendons at the backs of his heels. Taylans wore plasters on his legs for six weeks, the whole of the summer before he started school. The plasters were changed 2 or 3 times throughout the 6 weeks, each time pushing his feet up while they set. After the plasters came off, Taylan had to wear splints on both legs, just in time for starting school! The splints stayed on for another 6 weeks. After that we had regular visit's to see Dr Tuite, he gave Taylan stretches to be doing at home but there was never any improvement.

The last time we had an appointment with Dr Tuite, a nurse called us in, measured Taylan, weighed him, looked at his legs and then gave as more stretches, I started asking question like when will they scan Taylan, as Dr Tuite said the very first time he met Taylan, that he'd get scans & blood tests done but never did, the nurse couldn't answer me so she went off to find Tuite, he came in, told me to leave Taylan as he was, stop all the stretches and to come back and see him in a year if Taylan was still having problems. I took Taylan back to our GP, explained what had happened and asked for a second opinion, he referred Taylan to Mr Shanker at Colchester hospital.

Myself, Dan L, Dan C & Adele all went along to the appointment on 07/09/12. He went over all the usual stuff and asked to send Taylan for a blood test. On the Monday, I took Taylan to the medical center, not knowing that I was meant to buy the cream to numb his arm before the blood test, we waited 45 minutes to be called in, the lady told me that they can't supply the numbing cream, I could buy it in the chemist but we'd have to wait another 20 minutes for it to work, I looked at taylans face and could see he was petrified, I asked him if he wanted to get the cream or just have the blood taken and get it over and done with, he said "let's just do it now", from that moment I knew my son was one brave little kid!!

On the*14/09/12 at 10am my phone rang "Miss Foyle, this is Mr Shanker's secretary, we have Taylans results back and Mr Shanker would like to see you, he's asked for you to come in at 4pm today and said for you not to come alone", my heart sank, so many things went through my mind, it had to be bad if he wanted to see us that day, I asked questions but she wouldn't tell me anything. That was the worse day of my life, and there were many more to come. I rang Dan C and told him what the lady had told me, then we had to wait for what seemed like a lifetime until 4pm. All four of us meet at Colchester hospital, I've got no idea what Mr Shanker said, all I remember is him saying our beautiful perfect son had a muscle disease and he was going to refer him to Great Ormond Street Hospital.

We left Colchester hospital in shock and completely heart broken. Taylans first appointment at GOSH was on 05/10/12 with Dr Manzur, again the four of us and Taylan all went to the hospital, Dr Manzur is a Neuromuscular Specalist and is an amazing man, he had Taylan doing all different things, took photos & videos of him and spoke to him & reassured him the whole time. He told us that he thought Taylan had either Duchenne muscular dystrophy or Beckers muscular dystrophy and he'd need to do another, more indepth blood test. Taylan had the numbing cream this time, and even though he was scared, he sat as good as gold while the nurse took blood.

Dr Manzur didn't really tell us too much about Duchenne or Beckers, and to be honest, I don't think any of us wanted to know. A few days later, I was on my own and decided to google Duchenne, I was no way prepared for what I read, "The average life expectancy for patients afflicted with DMD is around 25", there are no words to describe how reading that made me feel.

On the 08/11/12 we we're asked to go back to GOSH for the results, all four of us we're sat in a row in Dr Manzur's office and all I heard was Taylan doesn't have Duchenne!! Well that was me crying again lol. Taylan was diagnosed with Beckers muscular dystrophy, a much milder form of Duchenne, Dr Manzur explained exactly what Beckers is and why people have it, he explained that it can only be passed on from the mother, at this point I was already pregnant with Grayson so they wanted to test me to see if I was a carrier as that would mean any boys I have would have a chance of having Beckers.

On the 17/12/12 my results came back, I'm not a carrier which means Taylan was just unlucky and is what is called a new mutation. We were first told that Taylan has a severe case of Beckers because he was diagnosed so young, he's since had a full physiotherapy assessment, ECG's & heart scans and Dr Manzur says that Taylan's not actually as bad as he first thought and will hopefully never have to use a wheelchair

We don't know exactly what the future will hold for Taylan, we can only take each day as it comes and as it stands today, there is no cure for Duchenne or Beckers. This is our story so far, I've tried to shorten it down as much as possible, thank you for taking the time to read it.
 

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Best of luck to you all, what a brave little boy have there. Hoping the road ahead isn't too rough for the little dude.

As you have said, take each day at a time, you have him in the best of hands at Great Ormond Street Hospital.
 
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