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, , started showing behavioral problems in 1988 at approximately age 8. After nearly seven years of misdiagnoses 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, , was free from the disease - which was a blessing because their youngest sister, 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 the original site here . The was started in 1999, and represented well over 200 families as of the spring of 2009 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. As of 2013 there are over 300 families represented on the MLD Family Discussion List.
Current Status - The Suhr Family - Summer 2016
Jclynn, our daughter free from MLD continues to live (too far away) in Florida with her husband Kevin and our three grand kids. She completed her EMT and paramedic training (while being a full-time mom) and worked for her local fire department for several years. She is currently a full time mom to budding pre-teenagers and a menagerie of pets.
Lindy continues to show notable physical declines, especially in balance. She needs considerable help balancing and is finding walking more and more difficult. She spends a lot of time in her custom wheelchair which also provides her great support. It's a two person effort to get her up and down stairs. In the fall of 2014 we purchased a wheelchair van to help her get around. She also uses a stander to stimulate her system and maintain her gut activity and bones. Lindy's seizures have reduced dramatically from weekly to once every month or two. We now have a nasal rescue med instead of the old standby rectal solution. How we move her upstairs, including bathing, as she loses the ability to stand is a great concern of ours.
Lindy turned 35 in September 2015 – a true miracle and blessing. The local paper, the West Linn Tidings wrote a nice article about her when she turned 32. 35 is 17 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 is now on medication to regulate her bowels and we know/fear the myelin damage is approaching her brain stem. As more and more of the brain is destroyed by MLD we continue to see basic body functions problems creep up on her.
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. We continue to take her with us on some of our MLD trips - God willing, she will be at the MLD Family Conference™ in New Jersey in early August.
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. They had to replace the battery in early 2012 and the electrodes are now no longer working.
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 (2 person job), dressing, & eating, and loves to be on the periphery observing any sort of activity. This past spring she had to move from the wonderful group home she had been in for over 15 years (another blessing) when the owner/operator retired. Lindy's new mid-week home is more medical capable, and unfortunately, far less active and "homey".
We remain blessed and are trying to give back as best we can through our work with the MLD Foundation.