Kai Levenson was just 12 years old when they first heard about the Phoenix Society’s World Burn Congress through a flyer in the mail.
“That is for adults,” Kai’s mother said when Kai asked about attending the annual conference. “No, it’s not,” replied Kai.
With a little convincing, Toby and Kai attended their first Phoenix Society’s World Burn Congress in 2014 in Anaheim, CA. Toby was concerned with attending the World Burn Congress because of the cost and the need for Kai to take time off from school, but decided the experience would be good for Kai. Toby was completely in awe to hear burn survivors and their family members sharing their stories with everyone at the conference during open mic sessions. It was an opportunity to speak honestly with other people who could understand, sympathize, and apploud their stories.
“I didn’t expect much for myself, but the Phoenix Society’s World Burn Congress was an emotional, physical, and spiritual experience for me.” Toby Levenson, mother of a burn survivor.
Children attend the U Belong program while adults attend their own programming. Along with burn survivors age 5-18, siblings and children of burn survivors all had a place to get to know each other and process their stories. Meanwhile, in the Parents’ Session, Toby recalled that the parents, all at different stages of grief, shared their journeys and where they were now in the recovery process.
“It is a wonderful family experience. Whole families go to World Burn Congress and you are able to check in with families year-to-year at the conference. I gave my phone number to a few mothers for them to reach out to me and was able to witness their progress at the next year’s conference.” Toby Levenson, mother of a burn survivor.
Toby was happy to see Kai forming new friendships with burn survivors her age at the conference and connecting with the friends that she had met at the conference through FaceTime and group chats throughout the year. Kai had attended burn camps since she was a young child, and was used to meeting other burn survivors, but Kai had never been around so many burn survivors from around the world.
“Attending the Phoenix Society’s World Burn Congress is so worth it. The World Burn Congress has been the time of my life and the highlight of my year. It is such a healing atmosphere and super friendly. You are able to make friends with people of all walks of life.” Kai Levenson, age 16, burn survivor.
Toby learned about the Alisa Ann Ruch Burn Foundation’s Phoenix Society’s “World Burn Congress” Scholarship program during a time when she was unemployed and had plenty of time but not enough money to attend the conference. Through AARBF’s scholarship program, Toby and Kai were able to attend the Phoenix Society’s “World Burn Congress” in Indianapolis, IN and Providence, RI.
“To attend one year is great,” said Toby, “but attending multiple times gives you a snapshot of the survivor’s and the family’s progress.”
Kai and Toby’s trip to the 2016 Phoenix Society’s “World Burn Congress” in Providence, RI was life changing for their entire family. Kai was burned at 18 months old while visiting her grandmother’s home in New England. As a result, Kai’s grandmother carried a lot of guilt and felt responsible for the accident. Then, in 2016, the Phoenix Society’s “World Burn Congress”was held in Providence, RI, and Kai’s 83-year old grandmother drove 2 hours in each direction to attend her first burn survivor event While a bit overwhelming for her,. Kai’s grandmother saw that their family was not the only family dealing with a burn injury and that their situation was not unusual or unique. Meeting other burn survivors and families normalized the burn, lessened Kai’s grandmother feelings of guilt, uplifted her spirit, and allowed her to appreciate the richness of the burn community.
In addition, while at the conference in Providence, Kai met a burn survivor from New Zealand with the same type of burn, who was burned at almost the same age as Kai. They had such similarities but lived an ocean apart; the burn community is everywhere and people like Kai are everywhere. Kai and her friend stillkeep in touch via Facetime. And, in 2018, Kai was able to visit her friend in New Zealand during the holiday break!
“We don’t choose to be burned. It’s a unique community. It’s like we share a common spirituality and nationality.” Kai Levenson, age 16, burn survivor.