The MLD Foundation was formed as a result of the journey taken by Dean & Teryn Suhr of West Linn, Oregon (a journey not unlike so many other MLD suffering families). Their oldest daughter, Lindy, started showing behavioral problems in 1988 at approximately age 8. After nearly seven years of misdiagnosis she was finally properly diagnosed with Metachromatic Leukodystrophy in 1995. At that time she was too far progressed to have any treatment, and her two younger sisters were tested for the disease. Her middle sister, Jclynn, was free from the disease - which was a blessing because their youngest sister, Darcee was affected by the disease. Jclynn was the bone marrow donor for Darcee. Darcee died in December 1995 of complications from the anti-rejection drugs interacting with her MLD disrupted metabolic system.
The Suhr's are blessed by the time they still enjoy with Lindy - but do not want any family to suffer alone as they did - not knowing about MLD early enough, not knowing who to ask for more information, and not knowing what to expect next as the disease and therapies ran their course. Dean set up the MLD Family as a world-wide e-mail discussion group shortly after Darcee's death. The discussion list is the world's largest MLD community.
That group grew in numbers and relationships for several years when the Suhr's decided to organize and host the first MLD Family meeting, MLD'2000, in conjunction with Dr. Bill Krivit in Minneapolis, Minnesota in the fall of 2000. 30 people and a half dozen doctors, researchers and care providers attended this first ever gathering to learn more about MLD and the people it affects. In May 2001 the Suhr's formed the non-profit MLD Foundation as a public benefit charity in the state of Oregon. The MLD Foundation then applied for and received 501(c)(3) tax exempt status from the IRS. Subsequently, MLD'2002 was held in the fall of 2002 in Pittsburgh, Pennsylvania. We continue to hold MLD Family Conferences and MLD Family Gatherings around North America and are planning our first European Conference for winter/spring 2009.
The MLD Family web site, which is the precursor to this MLD Foundation site, was launched on September 11, 2000. You can see an archive of that site here here. The MLD Family Discussion List was started in 1999, has over 200 members as of the spring of 2008 from over 15 countries and has been the source of several thousand messages of support, information and discussion between the MLD Family members.
Dedication
The MLD Family and MLD Foundation dedication can be seen here.
Current Status - The Suhr Family - Spring 2008
At this time (spring 2008), Jclynn, our daughter free from MLD is living in Florida with her husband Kevin and our three grand kids, Christopher (5), Madilyn(4), and Emma(3). Lindy has shown some dramatic decline over the past year in her ability to balance when walking. Over the past few months she is losing control to consistently hold her head up.
In the fall of 2006 we had a Vagus Nerve Stimulator (VNS) put in to "tickle" her Vagus nerve every few minutes to help control seizures. This worked well for the first year but as the disease progresses her MLD-induced seizures are break through the protection of this device more and more - perhaps every two weeks or so. Some of the seizures are very strong and serious to the point where she has stopped breathing and then resume on her own.
She had a MRI in the fall of 2007 and we compared it to her 2003 & 1997 films. We could see changes from 2007 to 2003 (which we knew based on her functional changes). With encouragement she can still talk responsively and loves to sing with us or at church. We remain concerned about her lower cortex being more involved (breathing, temperature, basic life functions). She requires 1-on-1 supervision and loves to be on the periphery of any sort of activity. She lives in a group home with lots of active peers during the week and participates in a day program. She is home each weekend with us. We remain blessed.