10 days before Rocco DiMarzo (aka Sunshine boy, aka The King) turned One he was diagnosed with an extremely rare genetic disorder by the name of Potocki-Lupski Syndrome. The results came after a series of tests, hospital trips, and nearly a year with several visits to our pediatrician. The disorder is a duplication of the lower portion of chromosome 17. Rocco’s health started to become a growing concern as he did not meet milestones such as sitting unassisted, poor feeding habits, slow growth and a general failure to thrive (Agh a terrible term for babies.)
This is very fresh for our family but immediately we knew our hectic pace had to slow down so that we could help our little man grow and navigate this diagnosis proactively. Rocco's Dad and I are both self employed and we do not have benefits. Both Rocco and his sister Georgia go to an incredible dayhome that we fully intend on keeping them both at, it is a 45 minute commute from our home but so worth it. Currently our family has at least two doctors appointments a week that means closing our cookie shop to be together, that means losing revenue at a business that requires every dollar coming in...
I never want to turn our family into martyrs on make Rocco's circumstances make him feel like a victim. I feel grateful that I have a son so special who choose me to be his Mama. I know this is our path because we are prepared to rise above limitation. I have learned to ask for help even when its out of my comfort zone. I have learned to help guide others through self care, yoga and breathe. I have learned to; embrace alternative care, differences (physical/mental/spiritual), and grow from what may seem difficult. I have always known that my purpose is to help Women and Children and create real authentic community. This is my path.
The ROCOCO Journey is just that - a journey. We have not clearly defined what this will look like, what I do know is ultimately it will serve as place for children and families with rare genetic disorders to come together. In the interest of full disclosure the initial funds will go towards all medical and wholistic treatments for Rocco and as we grow the purchase of our mobile unit that will serve as a more flexible generator to promote our wonderful baked goods and more importantly our main source of revenue that will support our ROCOCO Journey community.
All of our progress, full disclosure of expenses, photos, contact info and more can be found at - under ROCOCO Journey. You can find our family @katesawyer1111 or business @cookieoccasion on instagram.
Thank you for your support on our journey and blessings to you and your family.
(AKA Rocco & Georgia’s Mama)