<p><strong><span style="color: #0000ff;">I'M RUNNING TO HELP THEM. (Anglesey Half Marathon 2011)</span></strong></p> <p>I first heard of the butterfly children when i watched a documentary that followed a brave young man through his last few months as he lost his battle for life. Never before had i seen such suffering or such bravoury. In 2006 we were blessed&nbsp; with our first son, Tie. He is 4 now and&nbsp;is an amazingly brave boy full of life. But, when he was born our world was turned upside down.</p> <p>It was very scarey, he had skin missing from both legs on birth and within hours his body was covered in blisters. His mouth was raw and blistered and he couldn't feed, skin ripped from his hand as drs tried to take blood for testing.He had a feeding tube in his nose and was on a morphine drip and our hearts sank as he just seemed to be getting worse and worse. No-one knew what was wrong with him, and we just prayed that they&nbsp; would make him better. Days went on and he got worse, he was transeferred to another hospital and then finally he was diagnosed to have EB -a&nbsp;condition called epidermolysis Bullosa (EB for short), a severe form of it infact. In severe forms the mouth is affected, the internet told us as we researched everything we could on EB- the more we read the worse it got! We met with consultants and they told us he had a severe form, and this meant that he would have a short life. they couldn't tell us what type of EB until results of&nbsp; a test came back, so they told us that he had one of two types of EB. With one type he would blister alot internally and externally, he would get an aggressive cancer, his skin would rip off and he would die probably before the age of one (if you have children yourself you can imagine our anguish at hearing that), the other type of EB would bring the same intense suffering, but he would live longer , with the average life expectancy being 30 years.</p> <p>Before the results came back Tie took a turn for the worse, he caught MRSA on his leg wounds and we were told he would likely die. Against advice we brought him home and nursed him round the clock dealing with all his medical needs, bathing him in a special bath of potassium promanganate, administering his antibiotics, his morphine, his paracetamol, lancing and draining his blisters as they came up, dressing his open wounds and feeding him carefully using soft teats greased in white soft parrafin ointment to reduce mouth blistering. we checked on him every 2 hours. after 1 1/2 weeks his temperature dropped and he fought off the MRSA - our brave baby had won his first battle for life. In the month that followed we made plans for what might have been our boys one and only christmas and went crazy on decorating the house to lift our familys spirits. Just before christmas we got an early present, the results of the test came back and we were told we would have Tie a little longer, his life expectancy is 30 years . There are no gaurantees with EB though, so we just take every day as it comes and pray for the best, we know the road will have many bumps and all we can do is support our brave little man as best we can. He currently is awaiting an operation on his throat to widen it as it has narrowed with scarring and is making eating more difficult for him.</p> <p>SO there it is, you know why i am going to run this half marathon in september 2011. I am raising money for DebRA charity, for these children like Tie. I am raising money in the hope that Tie will be cured, in the hope that lives will be saved.</p> <p>Now its up to you to decide if you want to help these children. I thank you for reading my page and hope you make the right choice.</p> <p>Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving &ndash; they&rsquo;ll never sell them on or send unwanted emails. Once you donate, they&rsquo;ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it&rsquo;s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.</p> <p>So please dig deep and donate now.</p>