February 28th is Rare Disease Day. For a disease to be considered “rare” it has to impact fewer than 200,000 people in the United States, but can you imagine being one of less than 50 people in the WORLD to ever have contracted a disease?
This is the case for Brynne Bigham who was diagnosed at the age of two with Trichohepatoenteric Syndrome. It is a genetic bowel disease that hinders her ability to absorb food and impacts her gut, liver, heart, and immune system. Therefore, she relies on a nutritional formual called TPN and has a port and G button in order to receive it.
Brynne’s mother, Maggie Guthrie wants people who are in similar situations to remember that you are the biggest advocate for your child and that having a solid support system can make all the difference in the world.
“We’ve learned how to be flexible and how to just really depend on God to give us what we need when we need it” Guthrie said.
Brynne’s support system includes her family, friends, the wonderful staff at Covenant, and her best friend Ellie, who is one of the other 22 people in the world with the same rare disease.
“My mom she found Ellie’s mom, that’s her name, she found Ellie’s mom on a rare disease website” Brynne said.
“It was uh one of the brightest days that I can remember honestly of finding somebody else that not only had a child but a daughter that was close that spoke English that you know we could share so many things” Guthrie said.
Two years ago Brynne and Ellie got to share their Make-A-Wish trip to Destin, Florida and now Ellie’s family is planning a trip to Texas to visit from Canada.
Brynne’s family created an organization called Brynne’s Smiles as a way to help families in similar situations as well as Koda’s Kamp – a free camp for the siblings of children with rare diseases and chronic illnesses. You can find more information on these organizations at:
