Sunday, September 23, 2012

Garage and Bake Sale benefiting Nevus Outreach

We are having a fundraiser to support Nevus Outreach's efforts to find a cure for NCM. It is going to be this weekend, Sept. 28 & 29 from 8-4 at 720 S. 6th Street in St. Charles. It is a multi-family sale and will be featuring lots of great toys, children's clothing, housewares and electronics. Plus this year we are adding a bake sale! We are so thankful for Austin's current health and want to do everything we can to help fund the research to find a cure. Austin is five now and doing well, but we are looking to the future and want him to live a long, healthy life. Too many beautiful children have been lost to NCM in those 5 years. We just want to help in any way we can! Please join us if you are in the area this weekend. We so appreciate all the support.

It is a coincidence but significant that this week is the 5 year anniversary of Austin getting the shunt that saved his life, when we first found out he had NCM. He is now 2 years older than we were told he would live. Research and knowledge about NCM has grown exponentially since then but a cure is still not available. We are so thankful that treatments for the symptoms, such as a shunt and seizure medication, have been developed to keep him alive. But there is always the possibility that the lesions can become malignant or begin to change or grow in ways that cannot be managed and that's why we need to find a cure.

Saturday, June 16, 2012


Austin is doing fantastic right now. I should have come on the blog to report that a few months ago he took his very last dose of his anti-seizure medication! It was such a great milestone for him. Now he doesn't take any medicine regularly and that is a huge relief. He finished another year of preschool. He wants to be a rock star when he grows up, as well as a chef, a dad, and a pilot.  We decided to wait a year to send him to kindergarten as his birthday is August 24 and he's having a little trouble mastering some fine motor skills like writing. We hope to get some good practice in this summer and he will go to  5 day preschool in the fall. He is loving life and we are loving every minute of watching him grow.