I begin a new chapter with the blog today, as I continue with the mission: to become more, by helping others to do the same. In essence my goal is to touch other people’s lives, one word at a time. Beginning this week it’s the Sunday Series, something I will make an honest attempt to do every Sunday morning, to tell the world about you, to share your story.
The stories I am looking to share are those of tremendous courage, hope, inspiration, education and joy. In other words, those people who face great challenges yet find a way to overcome. Those who lead a path we all can aspire to follow. Those who have a way of lifting us up when we’re down, AND those who are living the dream, meaning from my point of view, they are doing exactly what they were born to do and have found a way to affect other people. They have been born, and now they know WHY. We can learn great lessons from all of the above.
The first ever in this Sunday Series: Ian’s Story.
His name is Ian Scher. He is the son of Marci and Brian Scher, the twin sister of Becca Scher and for most of the ten years of his life…Ian has struggled. Struggled to move, struggled to breathe, struggled to survive. His family has done the same, because every moment of Ian’s discomfort steals a piece of their heart.
Ian has a rare motor neuron disease, a mutation of the VRK-1 gene, a degenerative muscular condition. Marci says it is best described as a child’s form of ALS. The bottom line… it’s a terminal illness. Those are tough words to think, tougher to write, unimaginable to speak out loud, but somehow Marci is able to harness the will to do so. She can say the words out loud because Marci and Brian have accepted the inevitable. Now it’s up to them to make Ian’s journey as meaningful as possible.
Currently Ian has round-the-clock care, whether it be Marci and Brian, or the daily nurse who comes to the home, (minus the weekend days). Ian has no movement at all, he needs someone nearby in case he wants or needs something and especially if he should experience respiratory distress, (he has a trach and a ventilator, which since coming home from the hospital, have basically saved his life.) Ian can tell you what he needs you to do for him, his parents and his sister have become Ian’s hands, arms and legs. But Ian’s voice is growing weak and communication has become a challenge.
Ian attends a half-day of school (Chatsworth Elementary) and then he is tutored in math at home a few times a week. He is part of the Gilchrist Kids Palliative Care program, more like hospice-at-home. Home is where the heart is, and Marci, Brian and Becca want him to be there.
In light of the darkness, there have been moments of wonder: Ian throwing out the first pitch at the Orioles game at Camden Yards this past August, Ian going to sleep away camp this summer for 13 days at Camp Simcha Special. And a few years ago, through the Make-a-Wish foundation, Ian getting to go to Orlando to meet Spiderman. I would say the honor belonged to Spiderman, since the real super hero was the one who came to see him!
There has been heroism in the Scher’s struggle to learn what is wrong with Ian. For most of his life, no one could figure it out. But the Scher’s were not giving up. It wasn’t until a test, Whole Exome Sequencing, which became commercially available a short time ago, that the family finally could learn the truth. Blood was drawn in March of last year, and by July of 2012, the Scher’s had their answer. Ian had the VRK-1 gene mutation, only one of six people in the world known to have the disease. Marci and Brian are carriers. The chances of this happening are astronomical. The consequences…devastating.
But Marci told me a big moment in this journey was finding out why. She said, “having diagnosis was a huge weight lifted off of us. A huge loss would have been him passing away and not knowing what it was that caused it.”
So now there are the day-to-day challenges of Ian’s care, but Marci say it’s much more than that, “I still remember Ian walking and running around. It’s hard seeing other boys doing things I know he wants to be able to do. But maybe the biggest challenge for Marci is, as she says, “in my own mind, imagining what life will be like after. Knowing I can’t fix this.”
No one can fix it. And this is the reason I chose to tell Ian’s story as the first of the Sunday Series for this blog. Take a good look at the Scher family, facing life’s greatest loss, and watching it happen in slow motion. But each day they find a way to make every moment count, to give Ian every chance to live as normal an existence as possible, to make sure he gets to experience his share of this world, so he can touch others and have them transformed by him… no matter how much time is left.
Yes, the Scher family is redefining what it means to be courageous, determined and devoted.
Marci says she wants the message of this story to be about education. She wants others to know this gene mutation is out there, so they don’t face the same nine-year struggle her family did, trying to find out what was wrong with their child. But whether Marci, Brian and Becca admit it or not, their message goes so much deeper. It’s not easy to find the right words when facing the prospect of losing a child, but you need not look far, it’s the title of Marci’s own journal she is keeping during this journey: Treasure yesterday. Dream of tomorrow. Live for today.
Thanks Marci we will. And, we will pray for a miracle.
Until next time, thanks for taking the time.
(Update: This story unfortunately ended as the Scher family expected. Ian passed away on September 15, 2015. A true super hero to the very end, the world is a far better place because he came this way.
If you are inspired by Ian’s story and wish to honor his life you can make a donation to: Gilchrist Kids, 11311 McCormick Road, Suite 359, Hunt Valley, Md 21030