We C.A.R.E. Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support




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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 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, 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 1999, in conjunction with Dr. Bill Krivit in Minneapolis, Minnesota in the fall of 1999. 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. 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 here. The MLD Family Discussion List 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 2018 there are over 350 active families represented on the MLD Family Discussion List.


Dedication

The MLD Family and MLD Foundation dedication can be seen here.


Current Status - The Suhr Family - Winter 2018

We remember our MLD angel, Darcee, who got her MLD angel wings at age 10, 23 years ago today as I write this in mid-December 2018. We miss her so much.

Lindy, now 38, continues to show physical declines, especially in balance and walking. However, with Teryn and my extensive help she can still climb and descend the stairs of our two story house. We're not sure what we will do when she can no longer climb them. This past year she has been active in physical therapy to try to retain those skills. Standing is so important to good health. Her seizures are much more mild and less frequent than a few years ago –  a blessing also likely caused by MLD as her brain degrades and there is less to seize.

Lindy turned 38 in September 2018 – a true miracle and blessing. We cashed in airline miles and points from all of our MLD Foundation work and celebrated in Hawaii! Lindy loves it there.

She loves to travel. She attends our annual MLD Family Conference™ and visits her sister in Florida each New Years. In 2011 we took her on the trip of her (and our) lifetime - 5 weeks in New Zealand and Australia! She loved every moment of it - especially the special care from the young waiters and stewards.

Chewing, swallowing, and as described above, mobility are all challenges. 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.

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 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. In 2016 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".

Jclynn, our middle daughter, continues to live too far away in Florida with her husband Kevin and our three grand kids, who are growing so quickly (Jr. and Sr. high). Jclynn is not a carrier so MLD is stopped in our family.

We remain blessed and are trying to give back as best we can through our work with MLD Foundation, are active in newborn screening, rare policy, and registries.

 

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