On April 13, 2012, our family will be holding a spaghetti dinner and silent auction benefit to raise travel expenses for the MACS conference in the United Kingdom . The Micro and Anophthlamic Children’s Society was established in 1994. It is a model of excellence in the UK and is supported by professionals and parents. The benefit will be held at Captian’s on Long Lake in Isanti, MN. We are looking for individuals, companies, and organizations to help with donations of money, silent auction items or other services for this event to be successful.
In June of 2007 my newborn son, Ethan, was diagnosed with a very rare genetic disease called Microaphthalmia (small formed eyes). Two years later in May 2009, our 3rd child, Evalyn, was also diagnosed with Microaphthalmia. It was then we learned our children are blind and there is no cure. After several surgeries and all kinds of emotions, we went in search of other families who have gone through the same experience. Having the support of other families who have already been through what we were going through is invaluable. The “completely lost” feeling we had been living with has started to disappear.
Last summer we attended the International Children’s Anophthalmia/Microphthalmia Network (ican) conference in Boston, MA. There we met Barry,the chairman for Micro & Anophthalmic Children’s Society based in the United kingdom (MACS). While in Boston Barry invited our family the the MACS family weekend in the UK. This takes place from May 3rd to the 7th, 2012. MACS are helping with some of the cost in relation to airfare, accommodations and food.
The ICAN Conference was a wonderful experience and we have connected with many families and learned so much medically and genetically. Therefore to be able to give ICAN members a further insight and knowledge of what MACS has achieved in the UK would be an invaluable experience. We are hoping to learn more about the MACS organization and bring home ways to help ICAN grow and reach more families in need of support as they navigate this long and emotional journey.
Not only that but this weekend will also give our children a chance to make friends who are like them and will give us as parents the support and knowledge we need to raise our kids to lead full, productive, and independent lives. I, as Ethan and Evie’s mom, have volunteered to speak at this conference about our kids and share with other families the challenges and successes we face in raising our children.
Thank you in advance for any help you can give to making this weekend a possibility for our family. The connections we make there will serve many families through out the US.
For more information on MACS and ICAN please visit their websites:
