Mom organizes 5K to raise awareness for son’s disease

Wyatt and his dad Steven Catalano have a father-son moment in September at their home in Gilroy.

A plaque that states “All of God’s grace, in one tiny face” is on the wall of 11-month-old Wyatt Castalano’s nursery, a testament to the love his parents, Gilroy residents Shannon and Steven Catalano, feel for their son. On the day he was born, Oct. 31, 2014, they knew he was special, as all parents feel about their children. But the Catalanos knew immediately that their baby was special in a different way.
“As soon as he was born, I knew something was wrong.” Shannon Catalano said. “He was covered in lesions, fluid-filled blisters; he had them on his face, his stomach and his legs.”
The Catalanos were hurled into a world of the unknown. The day after Wyatt’s birth, at the urging of dermatology specialist Dr. Lillian Soohoo, he was bundled into an incubator with tubes and gauges attached to his tiny body and transferred from El Camino Hospital in Los Altos to Lucile Packard Children’s Hospital Stanford. There, the team of doctors spent the next several days running extensive tests in an attempt to identify exactly what was plaguing the newborn.
“They had a few differentials for him, possibilities of what they thought,” Shannon Catalano said of the physicians at Lucile Packard Hospital.
The least likely of those differentials was the rare disorder mastocytosis. People affected by mastocytosis are susceptible to itching, hives, blisters and anaphylactic shock caused by the release of histamine from mast cells.
Halfway through Wyatt’s one-week stay at the hospital, a skin biopsy was taken which confirmed that Wyatt had Diffuse Cutaneous Mastocytosis, a rare form of the already rare disease. The Catalanos were told there were less than 30 reported cases of the disease in the United States.
“The difference with Wyatt is that his body produces way too many mast cells,” Shannon Catalano explained. “You have to always be on alert and prepared for that possibility (of a trigger.”
Certain things cause his mast cells to degranulate, leading his body to release histamines at an abnormal level. Never knowing what those triggers are makes dealing with the disease very difficult. Things like sunlight, heat or cold, certain fragrances, such as strong perfumes, and even emotional stress can trigger the release of abnormal amounts of histamines, Wyatt’s mom said.
The rarity of the disease meant many of the doctors had never treated it, including Wyatt’s pediatrician, Dr. Joseph Gali. In his 27 years of practice, Wyatt is his only patient diagnosed with this disease. So treating the baby was somewhat a learning process for the doctor and for Wyatt’s parents.
“You only learn about these through textbooks,” Gali said. “At this point, I believe Shannon and Steven are a lot more knowledgeable than most general doctors.”
Wyatt was started on two medications initially but is now on eight medications, and his parents keep Epenephrine injections onhand for emergencies, such as anaphylaxis reactions.
“Wyatt has overall done very well,” Gali said. “He has a great family to care for him.
With the daily routine of medications, which the Catalanos said has become normal, including a prescription compound cream that helps alleviate itching, Wyatt’s condition continues to improve.
“I feel like the doctors have done a good job of adjusting his medicines as he’s gotten bigger,” Shannon Catalano said.
The good news is Wyatt’s doctors feel confident that his condition is the cutaneous form of the disease, not the organ-effecting systemic form. They have hope that the skin blistering and spots caused by his allergic reactions will resolve themselves sometime during puberty.
A bone marrow biopsy would confirm this diagnosis, but doctors feel the test is unnecessary at this time.
Throughout her son’s care over the past year, with all the countless procedures he endured, Shannon Catalano made an amazing discovery—about Wyatt and herself.
“It almost seemed like God gave him an extra pain tolerance mechanism,” Catalano said. “I feel a lot closer to God since he was born. I feel like I’ve learned a lot about my faith.”
The official diagnosis of Wyatt’s condition didn’t diminish the fact that the Catalanos still had many unanswered questions. Even though Shannon Catalano understood a great deal about her son’s condition, she and her husband felt there was still so much more they could learn. Utilizing her resources, she searched for information. That search led her to The Mastocytosis Society, which provided not only much needed information but also a support group. Partnering with The Mastocytosis Society, Shannon Catalano organized a 5K run scheduled for 9:30 a.m. Nov. 1 at the Gilroy Sports Park.
The goal of the 5K is to raise much-needed funding for research of the disease and to spread awareness of it, so others dealing with the disease can find help. Valerie Slee, chair of The Mastocytosis Society, feels Shannon Catalano’s efforts have already garnered a lot of attention and advocacy.
“Shannon’s done an amazing job,” Slee said. “It’s inspiring. She’s been so organized and so dedicated.”
Shannon Catalano has already raised $6,000 from proceeds from a T-shirt campaign featuring “Wyatt the Warrior”—little Wyatt donned in a superhero cape—in recognition of his strength and fortitude throughout this ordeal.An additional T-shirt campaign was recently launched on Wyatt’s website mastowyattwarrior.org.
With the combined fundraising efforts, Shannon Catalano hopes to achieve her goal of $31,000.
“I think that would be a great goal to reach, because that would be great to honor Wyatt being born on the 31st,” she said.
Optimistic that the 5K will be a success, Shannon Catalano said all funds raised will go directly to pediatric research of the disease, thanks to an agreement with The Mastocytosis Society.
“I feel like a lot of people have stepped up and fallen in love with Wyatt and wanted to do something to make a difference for him … and to eventually find a cure,” she said.
Check out Wyatt on Instagram @mastowyattwarrior and on Facebook at facebook.com/mastowyattwarrior.
5K & fun run benefiting The Mastocytosis Society                
9:30 a.m.  Sunday, November 1
City of Gilroy Sports Park, 5925 Monterey Frontage Road
$25 registration
Register at mastowyattwarrior.org

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