In April of 2018, we thought we were pretty much like every other typical family with two working parents and two children (our then 6 year old, Anna and 2 year old, Robert). We were trying to keep up with our kids and spend as much time together while maintaining sanity. However, on April 13, 2018, our life took a turn we could have never imagined when we took Robert to the pediatrician for a small bump on his spine. Three weeks later Robert was diagnosed with Morquio Syndrome (that affects approximately 1 in 200,000 to 300,000 children).
Having a healthy 6 year old daughter and a, to-date, healthy two year old made this diagnosis completely incomprehensible to us. Our child that was running and playing and acting like every other kid had a degenerative disease with a shortened life expectancy and might not reach 3.5 feet tall. We were incredibly fortunate to immediately get in touch with world leading specialists and geneticists and have been working ever since to ensure both of our children have great childhoods and are as unaffected by the diagnosis as possible.
Despite all of the surgeries and weekly infusion treatments, we have learned more about ourselves and the goodness of others than we ever imagined possible and are so blessed to have caring individuals from other Morquio families, to the nurses, to the doctors, to all of our friends and family, it is amazing what the village can do for our family.
We are committed to making sure Robert gets the best medical care, expanding what medical care is available to Robert, and ensuring he has the fullest life possible.