Junior’s Journey - Help Send Me To Boston

In October 2023 I woke up with awful tummy pains my mom took me to the ER a few times. The doctors could not figure out what was wrong, so my pediatrician sent me to a gastroenterologist.

My doctor ran lots of test and sent me to a few other doctors to help me. The weekend of Thanksgiving I was not getting any better, after feeling awful for over a month and losing weight my tummy doctor admitted me to Texas Children’s Hospital.

Since cancer runs in my family, I had to have an endoscopy and colonoscopy. Thank goodness my tummy didn’t show any signs of cancer!!! But my doctor did find something in my biopsies called Mast Cell Disease. Thank God for Dr. Chakraborty for specifically checking for this disease.

The doctors ran lots of new test with my new diagnosis, including a bone marrow biopsy. That was super painful, but I had to have it since my bones hurt so much. Thank God, my biopsy did not show the Mast Cell Disease! I was cleared for having Mast Cell Leukemia!

Unfortunately, I was still diagnosed with Mast Cell Activation Syndrome and Systemic Mastocytosis.

My doctor started me on a medication called Cromoloyn to help with the MCAS. It really sucks though. I have to take this four times a day and if I forget to take it, I get really sick.

Even though my new medicine helps my symptoms. It doesn’t make them stop. I have doctors monitoring my illness to make sure that it doesn’t spread to other parts of my body.

The prognosis for someone with SM is not promising, but my dad and mom have fought hard to find the best doctors and treatment.

Lucky for me I was accepted to Brigham and Woman’s Mastocytosis Center in Boston, Massachusetts. They treat around 300 people with Mast Cell Disease a year.

I’m really hoping they can find a new treatment to help me. I’d really like to be able to be a kid and not have to worry about being sick.

If you could help support me to get to Boston, I will forever be thankful for you! Even if you could just say a prayer that maybe Jesus will create a cure! 

***Update: Junior’s Appointment with Dr. Giannetti at BWH Mastocytosis center is Tuesday, October 22nd. 

We will leave the GoFundMe up indefinitely as the center he is going to for treatment does not accept our current insurance or additional plans that we have looked into. All expenses, incurred are out-of-pocket. The goal is to get a treatment plan in place that his team of specialty doctors at Texas Children’s can maintain here in Houston. The funds earned between now and October will go towards his initial appointment and any further testing as well as travel expenses to get to Boston.

Others have asked how you can donate outside of the GoFundMe. 

We will be having a BBQ benefit in Houston in early September…more details to come***