AGAWAM– Alivia McKay was just 3-years-old when she was diagnosed with Parry Romberg Syndrome (PRS), and now, almost a decade later, the Agawam community is coming together to support her as she battles the rare illness.

PRS, according to Boston Children’s Hospital is a condition where tissue on one side of an individual’s face gradually deteriorates. Over time the soft tissue on the side of the impacted face gradually shrinks, the bones in the face may change, and the skin may get thinner.

While the cause of the syndrome is not known, it is thought to impact around 250,000 people in the world, but the exact amount is unknown because the condition is often misdiagnosed. Because of how rare the condition is, insurance rarely covers the cost of expenses related to treating, managing, and recovering from the illness. This has been the case for Alivia.

Todd and Michelle Fairmen, who own the popular shake and tea bar, Nutrition First, in Agawam first heard of Alivia through her mom.

“Her mom, Shannon, started coming in months ago, she would come in twice a day,” Michelle told Reminder Publishing. “So we just started developing a relationship, and she would just share about family. And she talked about her daughter, she talked about Alivia and her condition.”

After getting to know the McKay family and learning of Alivia’s upcoming surgery on Aug. 21 in Wisconsin, Todd and Michelle decided to hold a fundraiser at Nutrition First to help with the cost of medical expenses. Michelle said the surgery will be Alivia’s third surgery and in total cost around $18,000. The family had received a donation of $10,000 and were able to raise another couple thousand dollars with a GoFundMe page, but were still around $5,000 short.

So with a goal to cover the remaining cost of the surgery, the fundraiser took place on Aug. 4 from 9 a.m. to 2 p.m. Shortly before the fundraiser, Michelle and Todd told Reminder Publishing, Alivia went to the shop and designed her own tea and shake flavors for the event. The tea, Passion Ray Sunshine, was named after PRS and proved to be a hit on the day of the fundraiser.

“Usually when I put specials up everyone is like ‘What’s in that special? What are the flavors in it?’ Todd said. “This time, people came in and said, ‘Give me the special.’They didn’t even ask what it was, they just said ‘Give me the special.’”

Michelle said in a normal day where Nutrition First is open for 11 hours, they usually make around 150 drinks. The day of the fundraiser, in just five hours, more than 200 drinks were made.

In addition to being popular, the tea and shake also helped raise money for Alivia’s surgery. “Every tea that was sold of that special tea we donated $3. If they bought a combo, a tea and a smoothie, we donated $5,” Todd said. “So out of those donations, it was over $300 in sales that we donated.

In addition to the specialty tea and shake, the fundraiser also featured a raffle with prizes including a laptop, Bruins tickets, a customizable handmade cornhole set, a car wash, a movie pass, and more. In total, the fundraiser was able to generate $3,918 towards the cost of Alivia’s surgery.

But the community wasn’t done giving just yet. Michelle and Todd found out on Aug. 6 that the money for the surgery was due the following day, on Aug. 7. Just $1,000 short, Michelle and Todd were determined to raise the last of the money and help the McKay family even more than they already had.

Throughout the day of Aug. 6, Michelle and an employee donated all the tips they received, filmed Facebook live videos to tell people about what they were doing, and encouraged people to donate. They even hosted a “power hour” for two hours, where anyone who donated during that time received a raffle ticket for a free facial from the spa next to Nutrition First.

“We had companies donate, we had a couple really large donations, we had one of our regulars donated like $300,” said Michelle. “We had someone else write a check for $100, so it was just the community came together.”

In just a day, Nutrition First was able to raise $1,000. They then went on to partner with Unbreakable Nutrition and matched the donation for a total of $2,000 raised in just a day. In total over the two days, $6,150 was raised to help Alivia and the McKay family pay for the cost of the surgery.

Todd and Michelle say they’re happy they were able to help the family, and Alivia who Todd said “is full of life.”

“Every time she comes in she’s happy, never looks miserable and she’s just a wonderful spirit to be around,” Todd said. “To do this for her, I think, is amazing for the community to come together.”

Michelle told Reminder Publishing it was an emotional day, “We cried half the day today, it is just such a warm, awesome feeling that the community came together.”