Help Aubree Enjoy Her Childhood Despite PJS

Imagine having a child who has unexplained stomach pains, random dark blue dots showing up on their lips, experiencing dizziness causing their balance to be off, anemia, going to the urgent cares and doctors multiple times over the course of their life. Then by the age of 9, they are finally diagnosed.

It's a rare syndrome that affects 1 out of 50,000-200,000 people.

It's Peutz–Jeghers syndrome.

PJS is an autosomal dominant genetic disorder characterized by the development of benign polyps in the gastrointestinal tract and hyperpigmented macules on the lips and oral mucosa.

What does this mean? It's a lifetime syndrome. Blood work every 2-3 weeks. Iron infusions every 2-3 weeks on top of taking iron medication at home. Blood transfusions when hemoglobin numbers are too low or to prepare for surgery. Every 6 months, they are having endoscopies, colonoscopies, and don't forget having to swallow a pill capsule so the doctors can see the entire GI tract. All to see how many polyps there are, which ones need to be removed due to bleeding and other complications that can occur without intervention. Having to travel over an hour for these procedures to take place.

This rare syndrome is something that Aubree has. Her syndrome is not genetic though; it is spontaneous. As most of you know, Amanda and TJ are two of my closest friends. They are extremely good people. So to see this happening to their family is heartbreaking to me. Amanda and TJ have both been tested for the gene and they were negative. So this is something that Aubree's gene makeup took on its own.

Amanda and TJ are extremely hard workers and dedicated to their family. Amanda is having to take off from work to take Aubree to her appointments.

I wanted to set up this GoFundMe for Aubree. I wanted to start something for her to be able to enjoy her childhood. Take away the thoughts of this syndrome and all the procedures and tests she has to have done. It might be just her buying a game she likes from the store to taking a trip to Disneyworld. Think of it as a "make a wish" situation, because essentially that's what it is. The prognosis for this syndrome is grim. So let's all come together and help this child live out some of her dreams.

Update: Aubree had a 3 hour complicated surgery this week (9/9/24) that is now requiring another Dr to see if part of her small intestine needs to be removed