14 Sep 2020 Boca Child Struggling with Hirschsprung’s Disease Can Use Your Help
3 years ago, I had my 3rd child, Jaylani. She became very sick after she was born. Before we were discharged from the hospital she was throwing up bile and gagging. After an X ray showed her bowel was distended, she was admitted to the NICU. When she was 2 days old, she was diagnosed with Hirschsprung’s Disease.
At 6 days old, she had to have surgery. She spent almost 3 months in the NICU. At 5 months, she had another surgery. This surgery resulted in a pull through. Since, they discovered healthy cells further up in her colon than the first biopsy showed. She did well after her pull through and went back in for an additional surgery at 5 months old. She spent 10 days in the hospital after her surgery. It was a slow process after her pull thru, however after the 10 days, she did amazing with the surgery. Other than battling enterocolitis and a hospital stay due to the stomach bug and dehydration, she has done well. But with Hirschsprung’s, you just never know when the other shoe will drop. It’s like walking on egg shells.
Not only does my daughter have Hirschsprung’s, she struggled throughout the last three years with this disease and had numerous hospital stays and surgeries. As a toddler Hirschsprung’s continues to impact her in so many ways.
This cause is near and dear to me and my family. I love my little HERO, and I hope we can raise awareness and also money toward research and on-going treatment.
My ultimate goal is to grow this organization and spread awareness through many different avenues (social media, 5K/10K races, ribbons, tee shirts ect ect). And also to continue to donate funding toward programs that are researching Hirschsprung’s or providing out standing care to individuals with Hirschsprung’s. I would also like to include information about Hirschsprung’s education
Who I’m raising money for:
I’m raising money for my 3 year old daughter Jaylani Kay. She was born with Hirschsprung’s disease.
Why I’m raising money:
Jaylani is now in need of several more surgeries.
How donations will be used:
Visits to clinics, diagnosis test, plus periodic re-hospitalizations and upcoming procedure she has this Sept 17.
Your donation of any amount will be greatly appreciated.
Please donate by contacting Reverend Charles Cocklin at breakingthechainsflorida.com