The story of Catriona
My name is Catriona Humphrey and I have been a parent to four beautiful children for almost twenty years; however, these last few months have been some of the hardest of my life. Recently we learned that our daughter, Fiona, will never grow up; she’s eight years old and most likely will not live to celebrate her sweet sixteen. Fiona was diagnosed with Sanfilippo Syndrome Type A, or MPS IIIA—a rare lysosome storage disorder. Fiona lights up a room with her laughter and her smile is contagious. Though she may not have many words, she is able to sense when someone needs to be cheered up and simply has to smile in order to get the job done. Fiona loves to jump on her trampoline, watch videos, and play in water. It is so sad for me to think that she won’t be able to enjoy these activities anymore. MPS IIIA will first rob Fiona of her ability to talk, then walk, and then eat; it will take her vision and hearing, cause her to have seizures, give her dementia, and then, in her early teens, will claim her life. There is no cure for Sanfilippo Syndrome.
A little over three years ago, long before we learned about Fiona’s disease, our family was delivered another diagnosis: Loin Pain Hematuria Syndrome, or LPHS. I was diagnosed with this syndrome, a rare kidney disorder; though it is not life threatening, it does cause debilitating pain and has left me permanently disabled. This diagnosis turned our family upside down. Originally living in Michigan, we had to relocate to Florida, a warmer climate, because the cold weather made my pain worse. Through all of these trials and tribulations, my husband, Randy, has been trying so hard to hold this family together; he truly is an incredible man. Randy works full-time in the evenings to ensure that he is available during the day to take Fiona and myself to all of our appointments since I am unable to drive due to my medications. Most days I am unable to be out of bed for more than a couple hours, which means that all other household and familial duties fall to the responsibility of Randy, including caring for and raising Fiona and our three other children. With all of this, Randy sleeps for only a few hours each night, yet is always full of energy and life—determined to find each and every thing to smile about; no matter what has happened in his life, he has always put his family first. Randy is the type of person who would literally give you the shirt off of his back. In the midst of all our family struggles, Randy continues to open our home to friends in need and is always happy to give coworkers rides home after work. I truly do not think it’s in his vocabulary to say no; it’s just who he is—it’s his nature.
Knowing all of this, it is hard to understand why our family has been so heavily burdened, and it makes it so much harder to cope with our situation when there is only so much that I can do to help. My hope, and the purpose of this letter, is to raise funds to help my sweet daughter, Fiona, and any other children who are burdened with this syndrome; we need to raise money for research, clinical trials, and for medication developed through those trials, and we need to do it now. As others with MPS know, we do not have the luxury of time. With each passing day, Fiona’s death is on the horizon. I’m asking for help by covering our story in order to help raise awareness; your coverage will help make a difference and can help us add a happy date to our calendar: that of Fiona’s cure. You can reach me at any time though my cell phone (517) 599-7807 (call or text) or email [email protected]. If I happen to be in an appointment and miss your call, my husband’s cell is (517) 256-8617. One of us is always with Fiona, so there will always be someone available to provide more information if needed. You can also read more about us at www.curesff.org/fiona. Thank you so much for your time; we understand how truly precious it is.
Regards,
Catriona Humphrey