It is with immense sadness that I report Mark has lost his battle with Adrenomyeloneuropathy. While he fought this disease passionately with every breath he took, he passed away at home with myself, his children and his pooch at his bedside on June 18, 2019.
So now, it’s time to introduce you to me, and my name is Laurie Moon-Schmorrow. I am Mark’s wife, and I helped him conceptualize Schmorrow Strides a long time ago. In his memory, I intend to continue his commitment to help create awareness of Adrenomyeloneuropathy (AMN) and Adrenoleukodystrophy (ALD) in efforts to help end this horrible disease.
As many of you know, Mark competed recreationally in many 10K marathons and half-marathons in his customized racing wheelchair when his health was “good” (whatever that means.) He was such a devoted man to this cause, and he really wanted to compete in the Boston Marathon. He trained and trained but life – and his disease – had other plans for him. After a series of broken bones in 2015, taking a new job in 2016, (while racing!) burying both of his parents, and getting married to me (wahoo!) in 2017, he was certainly busy.
Then, we got the news. After discovering Mark had Sepsis in Dec. 2017, the hospital wanted to do a series of MRI scans, which is when we learned his AMN had impacted his brain too. This was devastating, as the prognosis for AMN patients with cerebral involvement is very grim, indeed. We not only learned Mark would lose the ability to walk and move his body all-together, but he’d also severely struggle with loss of sight, memory, speech, motor control, the ability to provide all care for himself, increased infection risk, and much more.
We had only been married for three months when we learned this, but once again, Mark took it in stride. He cried and told me how sorry he was. That he knew things were going to deteriorate and he’d need care, but I took his hand, held it tight, and told him I was with him until the end of the line. I opted to leave my job to care for him, and while we struggled financially, we also had 14 months together.
We thought about our options, and decided to choose palliative-hospice care. We installed a ramp to help with transitions out of the house, obtained necessary mobility equipment and brought in a hospital bed. I enrolled Mark in an adult care program where he did lots of bowling, enjoying Gloucester seafood, and met others with symptoms such as his. We took a few mini-vacations and spent time together in theBahamas and Florida.
And while he did decline quickly in all the areas I mentioned, we also laughed…so much everyday. We cried too, but mostly laughed. While he jumbled his words a lot and did silly things, (and we all giggled of course) his “I love you” was NEVER jumbled. We always knew how much he loved us.
Mark brought IMMENSE joy to me and to our children, and he had a profound impact on anyone he came into contact with. He was so very brave, and battled this disease with a permanent smile on his face. While I will continue his efforts to raise funds to bring attention to ALD/AMN, our scholarship plans are going to change.
In addition to Schmorrow Strides Initiatives, which seek to provide advocacy assistance to those to obtain recreational and competitive sporting equipment, my family and I are in the process of developing a memorial scholarship to launch Spring of 2020. Please stay tuned for more information.
I’ll be sharing updates, details and criteria for the scholarship funds in the coming months. If you’re interested in making a donation to the Mark Schmorrow Memorial Scholarship, please email me and I’ll be in touch. I want to thank everyone who supported Mark throughout his journey to make a difference, and look forward to continuing that tradition in his memory.