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1 Comment [ View ]Living for Today / Teen to benefit fundraiser
WASHINGTON TERRACE -- Aleipata Fa'asulu-Mesi wants everyone to come to his fundraiser and relax while his family brings the islands to Utah.
The 12-year-old Washington Terrace boy is fighting a rare condition called malignant hyperthermia with recurrent respiratory tumors, a condition that requires surgery every two weeks so he can breathe.
To help Aleipata's family handle the expenses of his treatment, students from the Polynesian Dance School in Orem will perform Friday and share the Polynesian culture with the community.
"The free show is by the professional dance team, 'Pacific Generation'," said Aleipata's mother, Geni. "Sit back and enjoy two hours of Polynesian traditional dancing free of charge. There is no obligation to donate, although it would be appreciated, as a single mom."
The fundraiser will be held at the Tahitian Noni headquarters in Orem. If you can't make it, donations can be made to Geni or Aleipata Mesi at P.O. Box 1114, Ogden, UT 84402.
Aleipata's journey with his illness began when he was just 3 years old. One day, said his mother, he had no voice.
"Doctors said his tonsils needed to be removed, so we scheduled surgery for the next week," Mesi said. "Once in surgery, they discovered about 35 different size tumors growing from his lungs, throat, trachea, and covering his vocal cords."
He was immediately sent to Primary Children's Medical Center, where emergency surgery was performed to open his airway. After that, he had surgery every two weeks to remove the tumors.
"We have done this continuously since December 2000. We haven't had a break," Mesi said.
Injection treatments in California helped for only about six months. Doctors told Mesi that because the tumors are viral based, no amount of surgery will ever cure the growths.
He must continue taking medications and undergoing surgeries until his body can no longer handle it.
"We stopped the treatments when we found out one of his tumors was now malignant in the lower lobe of his lungs," Mesi said. "Hopefully, entering puberty will help open his airway and throat more."
The tumors are so big now that the surgery would choke him, so instead he is undergoing chemotherapy at Primary Children's Medical Center with hopes of shrinking the tumors.
According to John Hopkins Children's Center, recurrent respiratory tumors are rare multiple growths of benign tumors or papillomas that can be found in the nose, throat, larynx, trachea, esophagus and, rarely, the lungs.
It is caused by a viral infection and usually manifests itself in early childhood.
There are approximately 20,000 active cases in the United States. Surgery and antiviral medications are used to control the disease and, in rare cases, the growths can become cancerous.
Mesi said she knows of six other children in Utah who had the disease: Four of them died due to airway obstructions. Aleipata's four siblings are perfectly healthy.
"Primary Children's Medical Center and the University of Utah are treating his with surgery every 12 weeks, speech therapy every week and two new medications that he takes daily," Mesi said. "They are approximately $800 per month and are not covered by insurance. They also make him sick, and he's losing his hair."
Aleipata said he's coping with his illness the best he can.
"I'm kinda used to it, but it really bothers me when everybody says, 'Are you losing your voice?' I try to do my best at school and sports and try to push myself harder than other boys just to fit in," he said. "I don't want them to see me sick and I'm pretty good at covering it up and if they figure it out, then I tell them and move on."
Aleipata said his two best friends, Mark and Jared, never tease him about his voice, so he sticks with them and stays away from the mean kids.
"I'm not scared at all any more and I'm used to it after eight years, but this new medicine does hurt my throat. I can feel it burn and I'm more tired and dizzy," he said. "I sleep a lot more. If my mom would get cable, I wouldn't keep watching the same movies over and over. Just kidding."
Aleipata said without the support of his mother and older sister, Leilani, he wouldn't have made it this far.
"Wow. Now I'm crying. I couldn't go through this without those two. You have no idea. You just don't know," he said.
Mesi said she hopes the community will be able to come and enjoy the fundraiser for her son.
"Everybody has something to deal with in their life. Just come out and relax while we bring the islands to you in Utah," she said.
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This condition is not Malignant Hyperthermia. Malignant Hyperthermia is a life threatening condition that results from inhaled anesthesia.
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