Shoe shopping for a child with Alagille was surprisingly difficult

We couldn't find appropriate shoes right when our son was learning to walk

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by Jay Sandstrom |

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I love shoes. Shoe collecting has been a hobby of mine for quite some time. A good pair of sneakers or boots can take your outfit up a notch.

It’s been such a joy to share this hobby with my two boys, who love to go to the store to pick out a new pair of shoes. The excitement on their faces makes me so happy.

The process of picking out new shoes wasn’t something I ever expected to be attached to frustration and anxiety. But that’s exactly what we experienced with my son Finley. For a few years, it was challenging to find shoes that matched his growth and development.

An 18-month-old baby squats down on the driveway of a home, looking just to the left of the camera. He's wearing a tiny pair of black sneakers.

Finley Sandstrom wears his first pair of “real” shoes at 18 months old. (Photo by Jay Sandstrom)

Finley, 3, has Alagille syndrome, a genetic disease that can cause a wide range of symptoms, including liver and heart issues. Liver disease has caused him to grow much more slowly than other kids his age. We’ve taken multiple steps to address his growth via nutrition and medication, which he has responded well to, and we’re happy with his progress.

Apart from being small, he is on track developmentally when compared with his peers. But early in his life, we worried about whether his development might be delayed. To our joy, Finley has proven himself to be a strong, capable, and determined young man who has met all of his developmental milestones.

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Watching your child take their first steps is one of the best experiences a parent can have. With everything going on in Finley’s life due to Alagille syndrome, we were ecstatic to see him take those first steps. But we quickly had a sobering thought: Will we be able to find the right shoes for him?

We live in the Pacific Northwest, where it rains a lot. When Finley was learning to walk, the only shoes that fit him were soft-soled baby shoes.

Soft-soled shoes aren’t made for walking. Without a rubber sole, they get soaked on rainy or damp days. Bigger shoes weren’t an option for a toddler who was learning to walk. It was incredibly frustrating to feel like we couldn’t provide Finley with the tools he needed to be successful with this new life skill he was developing.

Time passed, Finley grew, and we were finally able to get shoes with rubber soles for him. The damp sole era was behind us, but the rain problem was not. Rain boots are an essential footwear item for kids where we live. And we couldn’t find anything in the size he needed. Additionally, finding sandals he could walk in also felt impossible.

As parents, we were painfully aware that our child has a rare genetic condition. But we were reminded of it again by the shoe dilemma, which caused renewed frustration and feelings of helplessness.

It’s a unique problem, and we were able to find clothes that fit for nearly every other item. It isn’t necessarily easy to see our 3-year-old son wearing clothing made for a 2-year-old, but we’ve come to understand that Finley is on his own path, and this will be part of our experience. We just focus on whether or not it fits.

A 3-year-old grins as he stands on a beach at low tide. He's wearing a big jacket and rain boots.

Finley Sandstrom, 3, shows off his first pair of rain boots that fit. (Photo by Jay Sandstrom)

Finley is growing, and thankfully, the shoe issue is in the rearview mirror. He loves his shoes, and he just picked out a new pair of checkerboard and rainbow slip-ons.

The difficult emotions this issue caused eased over time, although interacting with others who aren’t familiar with his condition can bring them back up.

I wish I had a solution to this problem for other parents. Obviously, if there were more demand for smaller shoes with rubber soles, they’d probably be more widely available. With that said, I know we aren’t the only family that is affected by this issue. While we were able to navigate the challenges, I wish other Alagille families wouldn’t have to go through that. Maybe someday kids like Finley will have more footwear options.

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to liver disease.


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