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. We renamed our family meetings to the MLD Family Conference™ and in the fall of 2002, we met next in in Pittsburgh, Pennsylvania. We continue to hold MLD Family Conferences and MLD Family Gatherings around North America. We held our first international MLD Family Conference in Munich Germany in March of 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 well over 200 members as of the spring of 209 from over 15 countries and has been the source of just about 10,000 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 - Summer 2011
Jclynn, our daughter free from MLD continues to live (too far away) in Florida with her husband Kevin and our three grand kids, Christopher (8), Madilyn(7), and Emma(6). Earlier this year she completed her EMT and paramedic training (while being a full-time mom) - we are quite proud.
Lindy continues to show notable physical declines, especially in balance. She cannot stand but a moment without someone steadying her and she always needs to be held/balanced when walking. We use the wheelchair more and more when walking any notable distance or going somewhere where there are no chairs. She is still able to make it up and down stairs but it is becoming less and less safe for me (Dean) to guide her.
She did turn 30 last fall - a true miracle and blessing. The local paper, the West Linn Tidings wrote a nice article about her. 30 is 12 years past the 4 years they told us she had when she was diagnosed in 1995. She has been blessed - and we are too!
She continues to have seizures weekly. They historically haven't excited us much, but the past 6 months have included some seizures where she loses a lot of her color and seems to stop breathing.
But that didn't stop us from taking her on the trip of her (and our) lifetime in early 2011 - 5 weeks in New Zealand and Australia! She loved every moment of it - especially the special care from the young waiters and stewards.
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 week or so with now noticeable loss of color during seizures. All in all, we have been managing her seizures and treat them as a basic fact of life. The VNS is a lot more convenient than rectal Diastat (Valium).
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, full help bathing, dressing, & eating, and loves to be on the periphery observing any sort of activity. She has lived in the same group home for over 20 years (another blessing) with lots of active peers during the week and spends each weekend with us.
We remain blessed and are trying to give back as best we can through our work with the MLD Foundation.