Eric is now 14 years old. He has Eosinophilic Esophagitis, Ulcerative Colitis, he is hearing impaired, has Asthma, Connective tissue disorder, a Eosinophilic Granuloma bone tumor on his back, he has Juvenile Idiopathic Arthritis and Pyoderma Gangrenosum. He can not eat any food and is feed through a feeding tube for 16 hours a day. Eric also has muscle weakness. All of these things together make it hard for him to socialize and fit in with others his age. He can’t keep up and is always in extreme pain.
It took 6 and a half years for Eric to be properly diagnosed because there was no medical code for his disease until 2008. There are no FDA approved drugs or treatments. We have to travel to Cincinnati, Ohio every three months for biobsys to see how aggressive the disease is. Often times we feel alone, because we don’t know anyone else with this rare disease.
Eric threw up every day 3 to 5 times a day, he did not grow, and has not developed correctly internally because of the lack of nutrition.
Two years ago, I thought we were going to lose him. I had to quit my job and take a part time job in order to care of him. I sold my house and bought an house at an on line auction so we could move to the country and he could raise chickens.
You don’t wake up one day and think, my life is forever going to change. You don’t think you will have to watch your child suffer every day with in pain and you have no answers, the doctors have no answers, and there is no cure.
Eric has always been a great inspiration through all of this though. He always thinks about other people and what they are going through. It is not often that he thinks only of himself. Until recently. It is because of the hardships our family has experienced that we founded Guided Steps to help other families like ours. Eric was involved with the Changing of A Step Parent Law in the State of Michigan, and has become a voice for sick kids like him. He was a speaker for N.O.R.D, National Organization for Rare Disease in the State of Michigan. He finds strength in helping others. Being “Rare” is not easy, however being “Rare” has giving us the opportunity to appreciate life and value every day. As his mom, his illness is hard to live with, but the lives he touches makes me so proud so see how he has turned this into something so positive. If it was me, I just don’t know if I could be as strong.