Jonah & Flora's Story

     Jonah was born in 2016 and right away, we noticed his eyes jumped back and forth with movements called Nystagmus. As time went on, we noticed he preferred turning to one side, had difficulty gaining weight, and started missing milestones. It took us 2.5 years and we had several misdiagnoses along the way, but in February of 2019 we got the diagnosis of ADSLD after a Whole Exome DNA Sequence. 

     Sadly, this diagnosis came when Flora was only two days old and we learned she had a 25% chance of having the disorder as well. Although she seemed so different than Jonah had been as a baby, she was diagnosed in May of 2019.

     It took Justin and I a long time to process these back-to-back heartbreaks. I had a particularly hard time as I also struggled with postpartum depression. Learning that our children had a progressive disorder and knowing other children had lost their lives to it felt like too much to bear. Some days I still struggle, but time has softened the blow and now we focus on each day and enjoy the good moments we have.

     Both of the children experience medication-resistant seizures, use wheelchairs, are non-verbal, and have cortical visual impairment. We keep them in therapies, but results are never the goal. Our goal is engagement and that they know we will never give up on them. We encourage fun! Both kids love music and silly sounds, and are quite active in their own ways. Dance parties are common in our house. So is Cocomelon and PJ Masks. 

     Through our kids we have learned to be more accepting of different kinds of people, and it has opened up our eyes to the many challenges disabled folks face just to navigate the world around them. I began advocating for accessibility and inclusion for them in school and from there, it blossomed into Rare Birds. The foundation got its name for Jonah and Flora, our dove and sparrow. My deepest hope is that in their lifetimes we are able to find treatments and a cure for this disorder.