As she awaits another new kidney, Isis Rivera hails life
Jul. 17, 2014
Isis Rivera marked her Sweet Sixteen in grand Quinceañera style last month. The Dorchester girl and her family and friends observed the traditional Latin American celebration of a girl’s transition into womanhood with a party bus and huge bash at Spinelli’s Function Facility in East Boston.
The birthday blow-out – sponsored by the Make-a-Wish Foundation – was made all the more special because Rivera, a junior at the TechBoston Academy, has been battling a life-threatening illness for the last four years.
Diagnosed with End Stage Renal Disease, a kidney disorder, at the age of 12, she has already received one donated kidney, but the transplant did not take. These days, Rivera, who lives off Dorchester Avenue near JFK-UMass station, spends three days a week in dialysis.
“Honestly, I don’t know how to explain it because it’s my life; it’s not like ‘ah this sucks,’” Rivera told the Reporter in an interview this week. “No, it’s something that I just have to deal with. It’s been rough getting sick so often, but I cope.”
Rivera has done far more than cope. A standout student who belongs to the National Honors Society, she has seized every opportunity to explore life beyond her own medical crisis.
Like most teens of her generation, she enjoys playing video games with her sisters Mariah, 19, and Taina, 10. She takes a Mixed Martial Arts class twice a week. But she is also doing an internship at Tufts Medical School helping with cancer research. “We’re essentially trying to find an alternative to chemotherapy,” she says.
This summer, she’s also volunteering at the Franklin Park Zoo, helping staff care for rodents and reptiles; she has even fed sloths. And, most recently, she entered the 2015 Miss Teen Massachusetts Pageant, which takes place in November.
Isis’s philosophy: “Why not? The worst thing that can happen is I lose. But I don’t want to regret not going.”
Her mother Eliana says that regardless of how many times Isis has been in the hospital, she has always maintained her GPA as an honor student – quite the feat, given the serious health challenges she continues to face.
In 2013, Isis had the kidney transplant but within three months it started to fail. With her body has rejecting the new organ, a second kidney transplant is crucial. Being back on the waiting list has meant those trips to Children’s Hospital for dialysis three times every week. Since her diagnosis, life has been a roller-coaster ride, a lot of ups and downs, but with “more downs than ups,” says Isis.
“When she first got diagnosed, she was really strong and through all the pain, the surgeries, and the illness she held through, she kept me strong. She was my rock instead of the other way around,” said Eliana.
When her daughter’s health began to worsen, her mother decided to contact the Make-a-Wish Foundation after speaking to one of Isis’s doctors about her condition. She made a referral to the organization on Isis’s behalf, and she was deemed eligible last August.
Make-a-Wish Massachusetts and Rhode Island, the chapter that works with Isis, grants wishes to children ages 2½ to 18 years who have life-threatening illnesses. Her initial wish was to travel to Europe with the People to People Ambassador Program that is based on a proposal made by President Dwight D. Eisenhower in the 1950s.
Unfortunately, she was not given medical clearance to travel. Although disappointed, she said there was something else she wanted: a Sweet Sixteen party to remember. “It was one of the things I wanted to do but I didn’t think it was going to happen because we didn’t have the money.”
Lauren Cotter, one of the Wish Program’s managers, began planning the event last October. It began with a trip to Sonia’s Bridal in Jamaica Plain to help choose a dress, decorations, and invitations. They then booked “Move It Music,” an entertainment company that provided DJ, photography, and videography services at highly discounted prices for Isis’s special day. A volunteer, Aline Castro, also donated and organized a candy table at the party, with cupcakes and cake pops, an element of the night that Rivera really loved.
On June 22, before arriving at Spinelli’s for the celebration, Isis rode in a party bus with all of her friends. “The party bus was one of the most fun things I have ever done,” she said. “Getting out of the bus to take pictures was fun too. A lot of little kids pointed me out, adults came up and said I looked nice, and one lady asked if I was getting married!” she added with a laugh. “It was more than what I expected; it was great.”
Having attention paid to her daughter and not to her illness was what her mother wanted the most. “Every time I talk to Make-a-Wish about it I break down and I cry because it was so wonderful to see her so happy,” said Eliana. “That day was magical. For one day, she was Isis, not Isis with Renal Disease, just Isis.”
The guest of honor attended her event wearing a custom-made replica gown of the princess from the Disney film “The Princess and the Frog.” Her date wore a frog costume for their first dance, and with a magical kiss at the end of the song, he turned into a prince. Spinelli’s was also transformed by Sonia’s Bridal for the night to make it glow like in scenes from the movie. There was even a swing where her godfather changed her shoes, symbolizing her crossing over to womanhood.
Isis says she chose the theme because “[Princess Tiana] is the only princess [of color] there is. It’s kind of hard to look like Arielle or Cinderella when you’re not even close to their skin color. I also like the storyline of ‘The Princess and the Frog.’”
Isia and her family are now beginning to look for local sponsors to support her in beauty pageant competition, something she would have never thought of doing if it were not for her birthday celebration wish coming true.
“She’s taking this opportunity not only to highlight her illness but also other children that need transplants. Basically be a voice for people that don’t have a voice,” said Eliana. “Being a teen and having a disease, this will be another outlet that she can use to support other kids. Isis is unlike any 16 year old that you’ll ever meet, she’s articulate, intelligent, I call her my middle-aged child because she was born middle-aged.”
Beyond that, said her proud mother, “She doesn’t jump around and act foolish. She’s very reserved and controlled; she wants to laugh and have fun and smile. She’s very artistic and calculated; and she really thinks things through. She’s generous and loving, that’s why her teachers and godmother love her because she’s like a light, she draws people to her. She makes me want to be a better person.”