Reporting on What is going on in the World. I'm a Crohn's Advocate and currently a Volunteer for the Crohn's and Colitis Foundation Of America San Diego and Desert Area Chapter.
Friday, December 27, 2013
Meet Ayla: A Young Patient Living Through the Fight of Her Life
Before the Year Ends I would like to share with you a touching story about a 2 year old little girl by the name of Ayla who was diagnose with Crohn's. In so many ways, Ayla is just like any other toddler. She loves to play and have fun. However, many things set her apart from others her age: she consumes all of her food through a gastrostomy tube, gets a nightly medication that suppresses her immune system, spends one day out of every seven weeks in the hospital for an IV drug infusion, visits a different doctor almost weekly, vomits once or more a day, and often cries when she goes to the bathroom.
For most of her life, two-year-old Ayla has been battling Crohn’s disease. Her painful IBD symptoms started when she was just six-months-old. Her case baffled all the doctors; they had not seen a child this young with Crohn’s disease. To this day, she is still the youngest IBD patient her gastroenterologist sees.
“I don’t even think she’s fully grasped that she has a disease. I don’t think she gets that she’s different from anybody else,” says Ayla’s mother Meno. “She’s either going to feel bad and be at home… or we can take her outside so she can be a participant in life.”
As difficult as it is to live with Crohn’s disease, Ayla and her family are finding the strength to still live fully and happily. Ayla’s older brother Jonah is fully aware of his sister’s debilitating disease and explains to people how she has to be fed through feeding tubes. With all of Ayla’s treatments, the family faced the stress of unbearable medical bills before family and friends stepped in to help. Meno admits to having suffered from deep depression and anxiety when Ayla was first diagnosed. To try and cope, she got involved with Team Challenge, which she calls a “life-changer” for her and her family.
“It made me feel super empowered, rather than feeling like a victim of the disease,” she adds. “Without having a focus on something positive, it’s easy to get swept up in the horror of the disease in your family.”
Though the family has found ways to manage, Ayla’s daily life will constantly be affected by IBD forever, unless cures are found.
From now through the end of the year, your donation will be doubled and help lead us to cures, hopefully in Ayla’s lifetime. Learn more when you visit: https://secure3.convio.net/ccfa/site/Donation2?13600.donation=form1&df_id=13600&s_src=1312holhp .