September is Hirschsprungs Disease Awareness Month
Bella has overcome a lot in her 7 years of life; surgeries, septic shock & long term hospital stays. Much of this shows you her bravery. Hirschsprung's Disease (HD) is the most painful part of her daily life that she has to overcome..and its been a battle for her from day one.
Living with this bowel disease, this genetic mutation with no explanation, is horrible. Just bluntly, its horrible. If you know of someone batteling this disease, know that they have looked extreme pain in the eye and fought it, over and over and over again.
Bella was 3 days old when we discovered she had HD. From then on it meant watching my newborn vomit multiple times a day, a distended stomach with painfully tight skin, an colostomy that later became an ileostomy, rushed into emergency surgeries and all because this rare disease robbed Bella of good ganglion cells in her colon and bowel. Her colon was dead cells and needed to be fully removed. It has robbed her of her ability to eat and drink and live her childhood without pain.
The majority of Bella’s surgeries are due to her having HD. Her bowels can not function, they can not move liquid, food nor poop through, due to this ugly disease. Therefore causing Bella to endure extreme pain, bloat, obstruction, surgeries, IVs, tubes, extreme diet restriction, a Gtube, unable to poop, and more.
Because of Hirschsprungs Bella is now listed for a bowel transplant. Bella’s rare form of Long Segment HD has caused her bowels to fail, robbed her of all her vascular access and made her look at the reality of living through the pain this disease has caused, until the call for a bowel transplant comes.