Today I’m introducing a new Face of ALS to the site. Jenny Smolinski was diagnosed with ALS in 2013 at the age of 35. I met Jenny online last year, and can identify with her in many ways. We are close in age, and we both have young daughters. Our ALS had a similar onset. We’re from the Midwest. We enjoy avoiding our ALS clinics. There’s probably more, but I’ll stop there, and move back to the more relevant data points.
Jenny and I also share a fear and sadness of leaving behind the kids who still need us. Her daughters are five and two. ALS with young kids is terrifying, but it can also be truly heartening. Our little girls don’t care that we’re in wheelchairs. Scarlett even uses mine to impress people. I took her to a new gymnastics place yesterday, and she made sure all the other kids could see her as she hopped up on my lap and we cruised out the door after class. When the ramp folded out of the van, two girls from her class gasped. “Cool!” one of them exclaimed. Scarlett preened.
I hear that’s not *always* the reaction from the older kids.
Jenny has written about the activities she engaged in with her older daughter, pre-diagnosis: mom and me gymnastics, open gym, play dates, and indoor playgrounds. It makes me think of my days with Scarlett back when I could drive, taking her to classes and lunches, singing and chatting with her in the car without being observed by a well-meaning third party.
Jenny’s experience with her younger daughter has, of course, been different. And after some ALS-related falls and a broken leg last year, she had a particularly hard time getting out of the house. Extra-not-fun with a toddler. But last month, Jenny wrote on Smo’s Sidekicks, her Community Facebook page:
Been cruising the streets of Clawson in my awesome loaner power chair. Thanks to my father-in-law for getting it for me and my dad for hooking me up with some sweet, long-lasting rechargeable batteries. Next up, we’re planning to purchase a lift for my van, so I can take it (or my manual wheelchair) out and about. I’m so excited about this, because it offers me so much more freedom and independence, especially with my girls. Looking forward to zoo trips and park visits and much more this summer!
This is the Jenny that I’ve come to know. Positive and enthusiastic. Grateful and accepting. With just the sweetest smile. I know she’ll have a great summer with her little monkeys, and I hope they have many happy days to come.
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Two young women with ALS. I was diagnosed 12/2013 at the age of 69. Praying for a cure and/or the fast tracking of Genervon.
So sorry that you two young women are PALS. May God bless you and help you and your families. My husband was diagnosed 3 months after retirement on 11/13/13. He is what they have called “a slow progressor.” He is losing control of his arms, but he is still functioning well except for exhaustion and sleeping 12-15 hours a day. It seems that everyone has different symptoms. I wish I knew how to help him cope with this horrible disease.
For Jenny and Sarah, I feel the pain for you two young ladies. Enjoy your daughters , I wish you both a good summer.