Super T’s Mast Cell Foundation began with a dream by our very own Super T, Taylor Nearon. The compassion and empathy Taylor demonstrated towards others is what fueled the creation of this foundation. After receiving a medical diagnosis of a mast cell disease in 2015, Taylor began framing her dream of what would become this foundation. Dealing with mast cell disease first hand and gaining an understanding of the complexities associated with an under-recognized disease, Taylor wanted to make a change. She wanted patients and caregivers to never feel alone, unsupported or fearful of how to pay bills.
To ensure this, Taylor intentionally provided opportunities for patients to receive grants to offset living and medical expenses. Her hope was to alleviate some of the financial burden associated with fighting this disease. This was the very cornerstone which helped Taylor build Super T’s Mast Cell Foundation.
Today, Super T’s Mast Cell Foundation carries on this same mission, creating awareness and education surrounding mast cell diseases around the world.
TAYLOR’S STORY
My name is Taylor, otherwise known as Super T. In July 2015 – July 7th to be exact – I was given the last puzzle piece answering the many years of traveling through the medical world with unexplained symptoms that simply were putting my body through a battle each and every day. After many years, I was diagnosed with a rare disease known as Mast Cell Disease. Mast Cell Disease, in my case, produce the correct amount of cells overall, but the cells believe anything my body comes in contact with I am allergic to. So for those who do not suffer from a rare conditions appreciate what you can do and have.
Before receiving this rare diagnosis, I was big into sports, school, just living your “normal’ teen life. School I had the grades, was a varsity soccer player, and was involved with what I had time to and ran track too. Soccer was my obsession (to put it lightly); besides volunteering as much as I could. When I wasn’t playing I could be found helping out within our church in ministries helping lift children spirits in the hospital along with serving in the food pantry. If I wasn’t there, then I could be easily spotted training for soccer/at a practice for one of the teams I was on or coaching younger girls in soccer. If you haven’t realized by now, soccer was my life. In general; sports, learning new soccer skills, spending time with friends/family, and making a difference in my community is what pushed me daily.
Once I had the diagnosis of Mast Cell Activation Disorder as an explanation and under the belt, life quickly changed. I went from an avid athlete, being involved, etc. to someone who was about to quickly lose a lot in my perception; but would gain as well. I went from working out 3-5 times a week to stay in shape to a girl now requiring tubes to keep her alive, and someone who had to be given CPR by an officer and their mom during an anaphylaxis reaction in 2015 after being gone for 5 minutes. I currently have two central lines, but within the last 2 years have had 4 different lines (a single and double line Hickman Catheter going to my heart, a feeding tube that goes into my stomach and intestines, and then a PICC Line for a few days in my arm). All these lines are how I get medications daily and in emergencies to help control the mast cells in my body.
As far as losing and gaining, we all lose and gain things in life. Specially for me and my circumstances, I lost/struggling with my outward appearance because I am so swollen due to medications and the disease itself. Even though I go right to the appearance I have had to look at the good and I have been able to make new friends with those with the same conditions as me, but more importantly, I have learned more about myself and if I wasn’t placed in these circumstances I believe I would never have learned these skills. I am taking on the mission of Super T, forming my foundation, and going to make a difference in the medical, most importantly Mast Cell Disease, world.
Who is with me?
TAMMY NEARON
Tammy Nearon, mom of Taylor, is the President of Super T’s Mast Cell Foundation. As president, she is very knowledgeable on mast cell diseases (as much as possible) and strives to spread this knowledge globally. As a rare disease, there is not a vast amount of information available, and Tammy aims to change this so that patients and their families may have all of the resources needed to help fight mast cell diseases.
ACCOMPLISHMENTS WITHIN THE FOUNDATION
Grants given to 26 patients
$115,000 in funds raised
53 volunteers