Larina McClain – Host of this site and the 2014 Birdies for Butterflies Tournament
McClainLarina@gmail.com
Colorado Resident, Realtor and Aunt to little William
For more info about me, feel free to visit my website at www.ColoradoRealEstateService.com
Or my facebook page: Mandison Luxury Properties by Larina
our prayrs for william i was born in 1968 i have 9 children 6of9 have epidermolysis bullosa simplex effecting mostly the jointed areas nees elbows fingers toes spine and people dont know how painful it is unless thay have it! ive traced it back 4 generations i know how costly it is ive probbly spent 500,000 on bandages alone so keep your head up and be strong for him
best wishes ronald stuart
Wow how do you do it? How come insurance doesn’t pay for it? Where do you live? Thank you for the kind words.
Our prayers are also with William and your family. My husband and 3 stepchildren also have EB so we know part of what you are all going through. We are from the UK so cost isn’t really an issue,especially for the children as medicines,dressings etc are covered by the NHS,it must be hard having that additional worry.
Best wishes
Tracey