Fighting HARD Fundraiser for Rare Diseases

Our daughter Alexandra has been fighting HARD (Having A Rare Disease) for many years battling many diagnoses, including but not limited to inflammatory bowel disease (Crohn's), vesicoureteral reflux in which she had a bilateral ureteral reimplantation, chronic overactive bladder, hydronephrosis, patellofemoral syndrome, osgood schlatter's disease, fibromyalgia, severe inflammation throughout her body, and most recently the likely possibility of juvenile rheumatoid arthritis. In addition, she has had issues with her heart that have luckily not been significant thus far. She regularly endures MRIs, endoscopies, colonoscopies, cystoscopies, catheterizations, biofeedback, and therapy as well as routine bloodwork, lots of medications, and doctor visits with each of her many specialists. 

While dealing with all of this, Allie began to feel as though no one understood what she was going through and consequently, felt very alone. She wanted to create a foundation where other kids who have rare diseases could go so that they would know that there were others who were like them - to help make HARD life a little easier :) ...and so began Fighting HARD! Alexandra has been an inspiration to many and continues to amaze us each and every day as she strives to find her "normal". 

We consider ourselves very lucky and hope that with each doctor/hospital visit, we get closer to finding the "umbrella disease" that possibly has a cure. Until then, we continue to fight HARD for Allie and help her to be happy each and every day.

We look forward to creating a foundation where she can help other children fighting HARD! If you or someone you know has a child who is dealing with illness or who suffers from a rare disease, please feel free to reach out. As the National Organization for Rare Disorders (NORD) states: "Alone we are rare, Together we are strong!"

Thank you for your support! We look forward to our little girl raising awareness and helping other children know that they are not alone!