As mentioned in For Noah and Laine: Every second is a treasure, as a toddler, young Noah VanHoutan had dreams of playing for the Chicago Cubs but was struck with devastating Battens disease. Presently nine years old, Noah has lost his speech, balance and mobility. While young Laine, his sister who is seven, slips further away each day and can only eat with extensive assistance.
The VanHoutan family efforts have intensified to battle this disease that presently affects 2 to 4 of every 100, 00 births in the United States. The disease receives little attention from the US government contributing less than 700,000 to research for a cure. Only a handful of scientists around the world are focused on potential therapies.
But this family has taken on a new passion, forging ahead to ultimately raise over 250,000 dollars funding several research studies and lobbying Congress. They have created Noah's Hope, a website that shows how others can volunteer, donate, slow or stop the degenerating effects of Battens. They have funded projects for enzyme replacement therapy and have recruited a new researcher at Rush University Medical Center to look at a new approach to therapies that may be available.
In the Chicago area, there are a total of five children including Bridget, Jasper and Ethan who are 8 years old with Battens. Between the ages of two and six, the disease began to ravage their muscle coordination and only a few years later, they cannot walk, and some cannot speak. Those diagnosed with Battens only have a life expectancy of 8-12 years of age.
Their time is of the essence and so is yours. Many that are looking for a new career challenge, an opportunity to add those volunteering accomplishments to a resume, or a sincere purpose for those retired to add to their life resume in their own failing years, should contact Amy Conn, Director of Advancement for Cures Within Reach at 847-745-1246.
On Saturday, November 16th at 5pm, a fundraiser will be held at the Cotillion Banquets in Palatine Illinois. Please check out the Cures Within Reach website for more information or send an e-mail to Annie Farnus, at FifthSeason5@yahoo.com.
We always search for a memorable way to extend our love and gratitude during the holiday season; a step from which we can be proud of our own self-less efforts. Think less of yourself, your problems, your disadvantages. Spend your weekend with a purpose, a direction for others and, though, you may not want to hear it, your life will be so much richer when you can give a promise or at least a prayer for others.