INAD: Our First Rare Disease Community

From August of 2013 until February of 2015, we lived with the diagnosis that Katherine had Infantile Neuroaxonal Dystrophy (“INAD”), a rare and progressive neurological disease. We were first given this diagnosis by Pediatric Neurologists at the Cincinnati Children’s Hospital. It was supported later by a Pediatric Neurologist at the Cleveland Clinic. We lived longer as an INAD family than we have yet lived as a NUBPL Mito Complex 1 family.

During the year and a half as an INAD family, we made connections with and began following other INAD families online. This was our community, our support group, and the only people in the world who knew what we were living through.

One family we learned about, but have never spoken to, are the Martins of Middleton, Ohio. Katherine falls between the Martin girls, Layla and Angel, in age. Layla was born three months before Katherine and Angel was born the next year.

We learned of the Martins through newspaper articles about the family. Just recently we found out that they have a Facebook group page and joined it this week. This was a missed opportunity to connect to another INAD family near us while we were still an INAD family.

Layla and Angel also were diagnosed with INAD at the Cincinnati Children’s Hospital. We did not know this at the time we were going there. The physicians gave no hint that they had another INAD family. One of the Neurologists did state that Katherine’s MRI was very very rare and that he had never seen one like it in all of his years of practice, but the oldest Neurologist at the hospital had seen one like it one other time. I now wonder if this was Layla’s or Angel’s MRI.

It is strange to think that we travelled the same roads, both literally and metaphorically, as the Martin family; we were given the same diagnosis and the same “road map” of our daughters’ futures by the same doctors, at the same facility, at almost the same ages, and roughly the same time.

Having been an INAD family for so long, we will always feel a part of that community and their stories will resonate with us. They are the stories of the daughter we thought we had. Katherine was bracketed by her future and past selves in Layla and Angel.

Layla will be laid to rest today at the Hoskins Funeral Home in Lebanon, Ohio. Rest in peace little one. Live in peace, Martin family.


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