Support RARE Disease Day!

       Two years ago, February 28th did not mean much to me. Now it means so much, tomorrow is Support RARE Disease Day! Tomorrow is a day I celebrate my son. A baby boy born with a genetic disorder that has been through 5 surgeries, 6 different therapies, and more doctor appointments than I will ever want to count. A few months ago, he had a gtube placement and a nissen fundoplication  that I thought would help and change everything for the better. He has started to crawl, mimic, sign, and do so much. His therapist and doctors have worked diligently to improve his conditions. He amazes us everyday, despite the new challenges of hormone testing, severe allergies, oral sensory disorders that present challenges for him to eat even pureed food, and surgery in March. Life is busy and difficult for Jude. Yet besides his difficulties, he is happy and so goofy! No one loves life as much as Jude! I hope today brings awareness and support to ALL children with RARE diseases. There is not a lot of information and research for the families and children affected by RARE diseases. In fact, I was sent home two days after I had Jude.  The doctors reassured us nothing was wrong, even though there was multiple signs identified in the hospital. We spent months fighting an unidentified syndrome. All RARE diseases need more research for parents, doctors, and therapist to become educated and prepared to take care of RARE children so they can have a better quality of life. Please support Jude and all children and families affected by RARE diseases!