First, let me preface my 5K donation plea page by stating that I am not a runner!! I am challenging myself and choosing to participate in the race because of my son. I can't even understand what he struggles with, feels and endures daily living with Epidermolysis Bullosa or EB. He is an amazing kid, simply stated.
Many of you already know me, my husband or our son so I won't bore you with my life details. If you know about EB, donate. If you don't know about EB, educate yourself and then donate. ;)
So Oxlee Jr was born 8/25/2001. I had a wonderfully normal pregnancy. When he was born (via c-section) the doctors noticed that he was missing skin on his hands and feet. My brand new baby was immediately transferred to a NICU over an hour away. I didn't get to hold my son for 3 days, until I was discharged from the hospital. It was a scary transition into parenthood for my husband and I. Our son was bandaged and the slightest hug or touch caused his skin so much harm, we were afraid to hold him. Not to mention, I couldn't even pronounce this disorder which we had never heard of.
Through lots of support, education and, quite frankly, trial and error, we got the hang of this nightmare called EB. Oxlee is now 11 years old. Some of the drs we saw when he was younger said that he probably wouldn't make it this long and that we had a better chance of hitting the lottery twice...their words!
My son is a tiny guy but his heart rivals those of giants. He is tough, brave and so tremendously smart. I would love to admit that his EB doesn't get him down but I would be lying to you because it does. It affects so much of his daily life that I am amazed he still has the capability to love others and be the jokester he's known to be.
His life has been spent in bandages from neck to toes, doctor appointment after doctor appointment and surgeries every few months so he can swallow. The things we take for granted are a struggle for him and THIS is why I choose to run. I can. I need to.
I, along with others who know the reality of epidermolysis bullosa, are running to raise funds for a cure in the hopes that in the very near future our children will not have to endure the harshness that EB hands out.
I ask for your support in making that dream a reality!!
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