Through one of the websites below, Madison, I was able to meet a beautiful young lady who has Wildervanck Syndrome, which is the trilogy of hearing loss, Klippel Feil and Duane Syndrome. I believe Thomas has the same encompassing syndrome but have not had a final confirmation as of date. Anyway, we have been sharing stories back and forth and this young woman has additional issues and has been through so much in her young life. I got an email from her yesterday and you could tell she was just beaming!! She was able to go to Boston and see Dr. Engle herself and Dr. Hunter. It was the first time in her life that she was surrounded by doctors who really understood her and what she was going through! How amazing is that!! I am so happy for her and glad that I was able to help someone else in that way. I am still hopeful that Thomas will get to go to Boston when the time is right for a full clinical evaluation.
It just warms my heart and I hope that anyone else who reads this blog and experiences this type of loneliness in your rare disease or syndrome that you will research, ask questions and keep looking. Its worth it!!
Thank you God for using me and letting my work be used for good for others!! We Praise you and Lift your name up!!!
I also meant to post on Wednesday, 2.29.12 and just didn't get to it. It was Rare Disease Day organized by NORD. It was a great way for us to come together and try to get more awareness for the 7,000 rare diseases that affect people all around us. Its so lonely and scary to not know what they syndrome is or what it effects or the future prognosis. There motto is "Alone we are rare. Together we are strong." I love it!! Also a part of this campaign was Global Genes Project. There Facebook page had a sharing of pictures with kids with rare diseases and I was able to post the following picture of my beautiful boy!! The idea was for everyone to wear their jeans for rare diseases. Again, its wonderful to connect with others who have similar struggles. I was able to send a letter to President Obama, our VP, Governor, Lt Governor and all of our local representatives through one site. It always makes me feel good to be able to share like that when I feel so strong about something and this has to do with my son!
Phil 2:4 "Let each of you look not only to his own interests, but also to the interests of others."
"Let each of you look not only to his own interests, but also to the interests of others." – This one is quite similar to the adage saying, “no man is an island”. We need each other to live and survive each day. Doing a small act of kindness can already touch the lives of other people and make a big difference. We should set aside selfish thoughts and start living to be “of service” to others.
ReplyDelete-Yolande Tiller