Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Here is our story:
Aaron and I (Kaley) are the parents of Ashlyn (7), Roman (4), Rosalie (3) and Atticus (2). We noticed Roman was delayed around the age of 1. Around 24 months he received an autism diagnosis. He was hospitalized just before age 3 due to a respiratory illness in which he had to be intubated and also underwent a blood transfusion. He had a major mental and physical regression immediately afterward. He saw several specialists and underwent so many tests, but nothing came up with a diagnosis that would explain all of his symptoms. After 3 years of searching for answers we finally received a diagnosis for Roman in October 2016 during one of his UCLA visits. A few weeks later we found out both Rosalie and Atticus shared the same diagnosis. All three children have Multiple Sulfatase Deficiency (MSD), a rare genetic condition that is categorized as a lysosomal storage disorder. MSD is progressive and causes loss of mental abilities and movement due to leukodystrophy. Life expectancy is shortened, but depends on severity and condition. MSD occurs in approximately 1 in a million people. For more information about MSD you can go to the NIH website:
https://ghr.nlm.nih.gov/condition/multiple-sulfatase-deficiencySince finding out our kids have MSD our lives have been a whirlwind. We decided to uproot our family in Las Vegas to Northern California for better and more specialized healthcare for the children. We had been traveling from Vegas to UCLA for medical appointments up until getting the MSD diagnosis. We wanted to live closer to a place that had a Lysosomal Storage Disorder Clinic so that's why we decided on Sacramento's UC Davis' Mind Institute. Our family moved to Rocklin, California just a few days before Christmas 2016. Thank you to all of those that helped us with our moving process and to those of you that have kept us in your thoughts and prayers. We are so truly grateful for each of you.
For the most updated information, please look at the journal entries below.
Thank you for being a part of our journey.
