Meet Carlee and her family in the US!

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Meet Carlee and her family in the US!

In the spring of 2022 our youngest daughter Carlee had a seizure. In the days and months that followed, an MRI with conformational genetic testing resulted in her diagnosis of MLC1.

Our specialist had never seen a case like this, neither did the neurosurgeon who ordered her MRI. In search of answers, I traveled to Chicago in late June to attend the United Leukodystrophy Conference, where I was able to learn about this disorder from the world’s leading experts. I also got the opportunity to meet two families with children who live with the same condition.

With the intent to provide Carlee with the best possible care, we traveled to Children’s Healthcare of Philadelphia to enroll her in their leukodystrophy clinic. There we decided upon her course of disease management with a specialist team we felt very confident about.

Carlee has thrived since her diagnosis. She has shown consistent improvement in physical, occupational and speech therapy. She has also remained seizure-free thanks to her new medication regimen.

Carlee’s contagious smile, accompanied  by her signature dimples, brightens every room she enters. Many tend to notice her new addition of a protective helmet, which she doesn’t seem to mind. She loves picking out new stickers to adorn it from season to season.

We’ve come very far in the year following her diagnosis. The mourning process over what this diagnosis meant for her and our young family took many months to fully accept. The encouragement of our faith and resources and experts gives us great hope that a cure and treatment are going to be found in Carlee’s lifetime.

Photo: Carlee sitting in mom’s lap, and older sister Chloe is sitting in Dad’s.


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