Join us in the fight against Late Infantile Batten Disease.
We will always have hope for a cure and always have hope for Bridget.

Harmony 4 Hope- Honors World Rare Disease Day

My dear friend, Kerry Morgan Hughes, a Music Enthusiast & Founder of Harmony 4 Hope, dedicates heart and soul to using music as a vehicle to comfort, create community and contribute to Rare Disease Research, Awareness & Education. She was initially inspired by Bridget, then turned on by thousands like this sweet girl, to do something- to raise some noise for rare disease.

In recognition of the 7th Annual World Rare Disease Day, February 28, 2014, youth volunteers at Harmony 4 Hope are sending some love to children who bravely battle the uncertainty of a rare disease diagnosis. Your donated iDevices will be filled with favorites and special requests and delivered to these children who are joining our campaign daily. This is initiative is known as Play it Forward.

Our sweet Bridget is fortunate to BE one of these lucky recipients of the therapeutic and calming effects that this music will bring. So send in retired or unused iPods, Nanos, Shuffle or iTunes gift cards for the benefit of bringing music to these special children.

Please email Kerry for details:
kerry@harmony4hope.org
www.harmony4hope.org

Posted by Sara Kennicott on 1.28.2014 – There are no comments for this post, be the first to join in!

A Fifth Season, Nov. 16th

Batten disease has become a part of our lives. We didn’t ask for it. We certainly didn’t want it. Most of us had never even heard of it. But now it has ravaged the lives of a family member, a friend, or a neighbor. And sadly, they are not alone. In the Chicago area, there are five children whose bodies are shutting down as they bravely fight Batten disease. The five children are fighting what is known as Late Infantile Batten disease, an extremely rare, degenerative genetic disease. For the first few years, the kids developed normally, toddling, talking, and laughing like any other kids. Jasper (8) loved to explore… Bridget (8) always wanted to go-go- go… Ethan (8) had a passion for all things transportation related…Noah (9) loved playing with trains…and his sister Laine (7) adored playing dress up. Unfortunately, everything changed quickly. Between the ages of two and six, the children began to lose muscle coordination and experience seizures. Within a few years, they began losing their ability to speak, walk, and feed themselves as their little bodies slowly shut down. All of these five children are now fed with feeding tubes, can no longer speak and are in wheelchairs. At this time, Batten disease is terminal between the ages of 8 and 12. If only there were more hours in the day, or a fifth season in the year, we would have more time to find a cure. And

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we would have more time for each of these special children to experience a childhood before Batten disease ruthlessly rips it away. It is time to find a cure. It is our turn to help. We, along with Cures Within Reach, are hosting our 3rd Annual Benefit to fund research on behalf of all five children, called “A Fifth Season…..Brightening the landscape of Batten Disease.” A casual gala for a serious cause, the event will be held on Saturday, November 16, 2013 at 5:00pm at the Cotillion Banquets in Palatine, Illinois. The Fifth Season fundraiser will provide a big benefit experience with a relaxed atmosphere, featuring fantastic live music, special appearances, an impressive live and silent auction, and an extensive appetizer, dessert, and open bar. Please visit the link below to secure tickets for this very important event. $65 before Oct. 1st, $75 after Oct. 1st, $85 at the door. www.cureswithinreach.org/events/a-fifth-season

Posted by Sara Kennicott on 10.21.2013 – There are no comments for this post, be the first to join in!

Shop for Bridget!

The Fall chidren’s consignment sale is drawing near: Saturday & Sunday, September 28th & 29th. As a consignor, Bridget raises money to help pay for her day to day care, special needs

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equipment and physical therapy. So please consider making a donation on Bridget’s behalf and shop the sale- look for the HOT PINK tags! Tree Time Christmas Classics building 22N102 Pepper Road Lake Barrington, IL one black North of Route 14, behind Pasquesi’s For more information, please visit the web site or email Jenny Welsh at www.growingcentsofstyle.com info@growingcentsofstyle.com

Posted by Sara Kennicott on 9.22.2013 – There are no comments for this post, be the first to join in!