Such an inspirational organization! How thrilling it is to witness the huge impact you have on such beautiful souls. Your gift, improving the quality of life, must take many hands (which makes light work) and is something that is appreciated not only by the recipient but the world of lives they touch (families, teachers, care givers, friends, etc. ). Thank you for being there to organize and disperse such joy.
I’m really glad you started your non profit. There are craniofacial foundations that help with travel and lodging but only one other for the actual medical expenses. My daughter, Ashley (age 10), has Apert, Hydrocephalus and Chiari with hearing loss. She just had her 30th surgery in May. The first 2 years we had $180,000 in out-of-pocket copays. Insanity. I was fortunate to get her on our state’s medically needy program as a secondary but in 2010 they changed the requirements and now it’s almost impossible to get on.
Just wanted to say keep up the good work.
When I heard you talking about your son, I became so emotional. I realize how difficult is to accept the problem, but I found that Leslie is a blessing in my life. All that I want is to give her the hope of hearing my voice telling her “I love you.”