2026 Updates:

Miles and his mother Madison continue to work on daily victories in their journey. Now almost 7 years old, Miles meets his challenges with determination and persistence, supported by his loving parents and multiple caregivers. He can walk independently for short distances, with a curiosity to explore the world. The family chuckles because he’s always so busy looking around that he often forgets to watch where he’s going!

With his nurse tending to his feeding and breathing tubes, he can attend school several days a week and seems to love his special needs class. His favorite thing in the morning is anticipating the arrival of his bus. In addition to living with myotonic dystrophy, Miles was also diagnosed with autism. While he remains completely non-verbal, he is learning some basic American Sign Language and can vocalize some random sounds showing his efforts to communicate with those around him. Although Miles often withdraws from social interactions, we are thankful that his retreats appear to provide him with emotional comfort. When prompted, he will bring out his smile and laugher - one of our greatest pleasures. His parents are experts at this! Despite his medical complexities, Miles' curiosity never fades. He loves weekend outings with his Dad visiting a local animal farm, enjoying train rides around the park, or exploring a playground designed specifically for children with disabilities. As expected, Miles’ progress is unhurried, on his own terms, and each new “Milestone” is a huge accomplishment for him - and a real joy for all of us who love him.

Madison faces her own unique set of challenges as she shares the same genetic condition as her son. Her condition is advancing faster than her family had hoped, presenting new difficulties for her. Despite her hardships, she keeps her outlook sunny and engaging – which has always been her personality. Madison has reached the point where she can no longer sustain employment, even though she wishes she could. As she begins to navigate the complex support systems available for individuals with her condition, the family is experiencing increasing financial strain. With only her husband's income and limited government support, their financial needs are not fully met. As a result, their extended family offers ongoing support to help. Any additional financial support remains deeply appreciated and invaluable.

We continue to walk this journey together as a larger family in faith. This website was created to keep all of those interested informed, and to provide a convenient way to help. If you have ideas or resources you’d like to make available, please don’t hesitate to reach out.

A few notes from Miles…

· I've recently been learning more sign language. I know several signs already. And while some of them might not be perfect yet, I always know exactly what I'm trying to say!

· I’m trying hard to recognize the letters of my first name. Man, that’s tough work!

· I’m no longer afraid of butterflies when my dad takes me to the butterfly house. Kinda fun to hold one … but not for long!

· I can’t talk yet, but I find myself humming a lot which my family thinks is pretty cool to hear and puts a smile on their faces. Maybe someday I’ll surprise them and start talking.

· A favorite part of my weekday is getting to ride the school bus with my nurse. It never has to wait for me because I’m always eager. I used to be in my stroller and could ride the fun lift in the back, but now that I can walk, I can get on the bus myself (with help on the big steps), and walk back to my seat for my nurse to buckle me in.

· I get lots of praise at school from my teachers when I can match some colors and shapes.

· While I know how to go down the stairs sitting down, I am learning how to do it by holding onto a railing and someone’s hand. Going up is harder. Most of the time I crawl up them, as I am getting too heavy to carry. I’m almost 7, you know!

· I love smelling fresh bread and putting it to my lips, but I’m not at all interested in eating it, or any other food in my mouth! Maybe someday!

Their Backstory:

In autumn of 2019 a beautiful baby boy named Miles was born, unable to breathe or move his tiny muscles. He was immediately attached to life-support and life-flighted away to a neonatal intensive care unit far from his mother who spent the next few days recovering from her C-section - without the opportunity to nurture her newborn son. In the intense, emotional weeks that followed, neonatal specialists and geneticists discovered the source of Miles' challenges: a rare and severe genetic condition called congenital myotonic dystrophy. Miles' mother and father were then also tested, resulting in the additional discovery that his mother shares the same genetic condition. This explained previously unexplainable symptoms she was experiencing in her life. Thus, lightning struck twice in this young family.

So began the life of Miles, the journey he and his mother share, and the harnessing of resources to help them deal with this debilitating condition.

There is no cure for myotonic dystrophy. Miles' mother will get progressively weaker as she ages and already has special health considerations and symptoms caused by her diagnosis. Miles breathes through a tracheotomy, is fed through a feeding tube, can only walk for limited distances, cannot speak to express his needs or desires, and requires round-the-clock care. Still, his progress is inspirational. He is curious with the world around him and enjoys exploring all things.

Geneticists advise that he may continue to show improvements prior to adolescence, when his muscle growth outpaces his myotonic dystrophy. But statistics indicate if he survives past adolescence, his muscles will stop growing and his dystrophy will inevitably begin to catastrophically intensify.

We don't know how long we will be blessed to have Miles, and we don't know how fast his mother will worsen going forward. But however long we have him, and whatever his mother faces - we will make their journeys a little easier. So, we have initiated The LoveForMiles Trust - a special type of non-tax deductible Trust to help those dealing with disabilities. All donations go directly to help this family. There are no management fees or compensation of any kind to those of us that organize this help.

Your donations will likely be used immediately to help with a variety of current needs. If assets are accumulated in excess of immediate needs, the Trust can hold them for the future - such as an ADA-friendly home or a vehicle big enough to carry needed medical equipment.

We, are a collection of like-minded individuals committed to helping. We know that we cannot help everyone. But we can make a real-life difference for Miles and Madison, by carrying some of life's burdens for them.

To us, love is an action step forward. And we can love...for miles!

How far can you love?

Support LoveForMiles.org

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