I just want to share a little information that I am not to keen about sharing on Jonathon's Facebook page. Due to it being open. I have gotten a few messages to why am I selling bracelets to raise money when I should be donating the money to the babies born with EB? Why do you need help when you have three kids that you shouldn't of had then? How do I know Jonathon is real and that the money actually goes to him? That is just a few but you all get the jist of what they are like! The first thing I would like to say is right now there is no cure for EB so, young, old, new the need is just as great. EB has caused a financial strain on our family! I love Jonathon and would never trade him for anything and to me he is perfect in every way but, he does have complex medical issues and things that need to be bought in order to keep him healthy in everyway. Many appointments that he goes to, hospital stays that he has to do because of serious infections. Jonathon is not the only one in our family that has medical issues, I have Rheumatoid Arthritis and there are some days I can not even get out of bed and have now started using a cane to help with my hip. I am only 32 years old. I didn't prepare myself for all of this 2 years ago I was working a full time job as a family advocate for a family homeless shelter. In 2008 I was pregnant, going to school, doing my internship, working and taking care of my family. 2010 My health started to decline the same year Ariana was going through so, much lets just put it this way the school was restraining her, making her feel alone, punishing her thinking she was acting out when they refused to listen to me that she had a sensory processing disorder, auditory issues and Autism. Thats when my health started taking a turn for the worse. I would be fighting with the school while working, would have to get up in the middle of meetings at work and run to her school because she was being restrained. It was the most stressful time seeing your daugter crying out for your while being held down and you trying to tell them to let her go, and they are saying bad things about her in front of her. After all of this my health started getting worse and I went from full time to part time to a few hours a day. Luckily my boss was very understanding and I am forever grateful for her listening to me cry in her office because I was so stressed. In 2012 I was laid off. I went on unemployment and if any of you have been on unemployment you know its not much, it helps but its not a job. The last three years I have spent so, much time at doctors for both Jonathon and Ariana. Many OT appointments for her, evaluations, doctors, and anything else. All while my health was going down hill. I was not taking care of myself My kids came first and that put me in a downward spiral! Fast forward to today August 28, 2013 I am no longer on unemployment! There are days where I need to decide if I want to pay for food or my medication. I am on 9 diffrent meds. Its usually food for the kids. I do get FS but it is not that much. The only income we have is Jonathon and Ariana's SSI and that goes to every bill that we have. So, there is not any extra money for gas for appointments, the extra things the kids need school supplies, clothes, therapeutic things for Ariana and Jonathon. Jonathon is 2000% real and does have EB we are not sure on the exact form because our insurance wont cover the cost for that test. Is he as severe as some NO he is not but he is Jonathon and in himself has EB issues. There is no one fits all when it comes to EB and how it affects each person. The money stays in my Paypal account and that card is only used for him. If someone sends a donation I deposit into my bank and then into paypal. I often tell people if you are not sure you would like to send money, I have made a wishlist for Jonathon on Amazon. To find it you go to Amazon.com and search wishlists and type in Jonathon Connolly. You can also send gas cards, walmart gift cards, cards for dinner or food, or any other type of gift card. This is not ment to make you feel bad, but, I wanted to explain a few things to why I sell the bracelts. The bracelets are made by me and the beads are given to me by family, friends, some wonderful followers on my shop page that send in gift cards to craft stores to help with my cause. I am sorry this is long but, I wanted to explain a few things. We are truley great ful for all the people that have bought a bracelte, purchased items from his wishlist. Or just given us a donation to help. Right now we are getting insurance bills and fighting with them for covering supplies. I would also like him to go to Cinninnati to their EB clinic but as of now insurance WILL NOT cover it :( but I can only fight one battle at a time. Thanks to all and much Love Whitney
Follow Jonathon at: www.facebook.com/jonathonaebwarrior
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