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.
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 we 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 using the LokoMat to try to retain those skills. Standing is so important to good health. Her seizures are much milder 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.