The following stories are about Cameron Twitty his diagnosis was a mystery until just before Christmas 2006 when, aged 12, doctors determined that he had XLP.
(New Haven-WTNH) _ A 12-year old Hamden boy finds himself in an all-too familiar position- fighting for his life.
First as a toddler he had to overcome cancer. Now he is battling a rare genetic disorder that is attacking his immune system.
Strength can sometimes be found in unlikely places and for the Twitty family, it comes from 12-year old Cameron, the person who medically is the weakest in the room.
"Cameron is definitely our strength and our hero. He doesn't complain. He's brave," said Cameron's mother Ladora Twitty. "When Cameron was two, he was diagnosed with non-Hodgkins Lymphoma."
The cancer was treated and he made a full recovery, but Cameron came back to the hospital in September. Doctors thought he had pneumonia but it turns out Cameron was really sick. He was in a medically induced coma for three weeks.
"The prognosis wasn't really good for Cameron," said Ladora.
The diagnosis was a mystery until just before Christmas when doctors determined that Cameron had an extremely rare genetic disorder affecting his immune system. It is called XLP or X-linked Lymphoproliferative Syndrome and it is diagnosed in just one in a million males.
"Currently the only treatment for this is a bone marrow transplant," said Ladora.
Now the search is on to find a match for Cameron. In the meantime, he gets regular treatments at Yale New Haven Children's Hospital. On Friday his bright smile greeted Jarrett Dillard, a college football player in town for the Walter Camp awards.
The Twitty's say they have been overwhelmed by support from family, friends and co-workers who have provided shoulders to lean on and organized fundraiser's for Cameron. More than anything they have gotten through this by looking at Cameron.
"If I think of something that I think is really hard or I'm going through something kinda tough, I just think of him. What I'm going through now is nothing compared to what he's going through or has been through," said his brother Corey.
Published 12 January 2007 on Connecticut News and Weather (WTNH.com).
Written by News Channel 8's Chris Velardi.
ANSONIA — Students at Prendergast Elementary School may not totally understand everything that's happening to their principal's son. But they do know young Cameron Twitty is not feeling so great these days, and they want him to get better just as much as his mom does.
The signs of support for Prendergast Principal LaDora Twitty and her ailing 12-year-old son Cameron are evident in the school's halls and offices. Students and teachers speak of their concern, compassion and a lot of hope for the boy. Some even wear a red wristband in support of Cameron.
"I'm very touched. It's very touching to see so many people care," Twitty said, repeatedly offering how much she misses her job.
Cameron said the messages make him feel "special.
"It just makes me feel like I'm loved and stuff and that people care about me," he said.
Twitty took a leave of absence from her job in order to be with Cameron, who was diagnosed with X-linked Lymphoproliferative Syndrome, also known as XLP.
This rare immunodeficiency disorder is diagnosed in one out of a million males.
Symptoms of XLP include severe, life-threatening mononucleosis, with fever, inflammation, sore throat, swollen lymph glands, an enlargement of the spleen and liver and abnormal liver function.
The only treatment for Cameron's condition is a bone marrow transplant. Last month, he went to the Cincinnati Children's Hospital in Ohio for treatment and to help locate a marrow donor.
The best news in Advertisement Click Here! months arrived at Prendergast Elementary School on Wednesday, when Twitty called to announce that a donor match for her son had been found. But it will take some time before she returns to school.
The departure of the principal's smiling face from the halls has Prendergast students asking plenty of questions. And some of them are reaching out to keep Cameron's and his mother's spirits up.
Anita Bazelewicz's class of second-graders were among the first at Prendergast to keep in touch with Twitty and Cameron after she took time off. The class has sent Cameron e-mail messages and visited his page at the CaringBridge.org Web site.
Last week, students asked about how he was doing, what his favorite sport is, and sent him a few jokes so he could enjoy a little laughter.
Patrick Palmer, 7, was happy to send a joke or two to Cameron.
"It's sad. He's going through a rough thing," Patrick said.
Early on, it was mostly teachers keeping in contact with Twitty and Cameron.
Now, school staff will begin collecting letters and cards with well wishes for the young man as he continues his treatment, according to acting Principal Amy O'Brien.
The students don't know much about Cameron's illness, O'Brien said. But they do know Twitty is home caring for him and they're concerned for her, as well as Cameron.
"They say 'Tell Ms. Twitty I miss her and I hope he feels better,' " O'Brien said. "It makes sense to them. Mommy is staying home with her child."
Bazelewicz said most of the students do not really know what is happening with Cameron.
They do know that he needs bone marrow and know his body has a hard time fighting germs. Reaching out to him, she said, makes them feel like they're helping him get better.
"Some of the boys relate to him," Bazelewicz said, noting that some of her students are New England Patriots fans, as is Cameron. "He's only a few years older than them. They're sad he's sick."
Second-grader Shelby Nolan, 7, can't wait for Cameron to feel better so she can share a smile with him. She also wants to see "Ms. Twitty" again, so she can give her a big hug "because I miss her."
For her part, Twitty is excited to finally have a donor for Cameron and happy when she reads the responses from her pupils.
The school has rallied around Twitty and Cameron in many ways.
Teachers have created gift baskets that will be raffled off to benefit the family as it pays Cameron's medical bills.
The school district will also host a Feb. 12 pasta dinner at Ansonia High School as a fundraiser; it runs from 5 to 8 p.m. Snow date is Feb. 13. Tickets are $10 for adults, $7 for children 4-11 and free to kids under 3. Tickets may be purchased at the following locations: Ansonia High School, Ansonia Middle School, Mead School, Central Office and the mayor's office. For more information call 736-5095.
Published 4th February 2007 on The Connecticut Post Online (ctpost.com).
Written by Melvin Mason, who covers the Naugatuck Valley.
NEW HAVEN ' For most school children, the holiday vacation is never long enough.
But seventh-grader Cameron Twitty can't wait to walk through the doors of Wintergreen Inter-district Magnet SchoolWednesday.
Cameron, 13, will return after being out since September of 2006 because of an immune system disorder so rare it only affects one in a million males.
'I'm excited and happy to go back to school,' said Cameron. 'I missed my friends and my teachers ' most of my teachers.'
Twitty has spent the last 14 months or so battling X-linked Lymphoproliferative Syndrome, or XLP for short.
He just got word a few days ago that he can start school. That speaks volumes about how high doctors put his immune system, because being around a lot of people, especially children, has been taboo.
For Cameron, a social kid, the side affects of chemotherapy that prepared him for a bone marrow transplant were easier than being away from his friends.
Cameron will have to wash his hands a lot and isn't yet allowed to change his cat Simba's litter box, but, otherwise, he's good to go. His school days will be abbreviated in the beginning.
He came home from Cincinnati Children's Hospital just before Thanksgiving after being away from Connecticut for nearly a year because of treatment.
'It's been wonderful to have him home,' dad Michael Twitty said. 'Everything is going well.'
During those first months of illness in 2006, Twitty was confined to his house, where germs were of great concern. So, he couldn't see friends, play sports or go out.
Cameron, who had to put amodeling and acting career on hold, didn't let the illness wipe him out.
He stayed remarkably focused on getting better, spreading the word that he believed in miracles.
That resolve helped adults in his life keep faith as well.
When he got the call to go to Cincinnati Children's Hospital, he and his mom, LaDora Twitty, had to fly by private jet because there would be too many germs on a commercial flight.
In late April, after chemotherapy and a tough search for a suitable bone marrow donor, Cameron finally had a bone-marrow recipient ' his only hope for recovery.
Cameron kept in touch with friends and schoolmates by webcam, e-mail and other technological wonders of today. His class sent a DVD of themselves and made a Patriots quilt for him, filled with personal messages.
But it was never the same as being with them.
Now, with his return to school imminent, Cameron is smiling, laughing, jumping and gets on the couch by launching himself over the back like a rocket.
His teenage sarcasm mechanism is working well, too.
'He made a new house rule,' Cameron said of his dad, making quote marks in the air around 'house rule.' 'Everytime the Patriots play, no other TV show can be on.'
Cameron said he feels great, but tires a little easier than usual; doctors told him to exercise.
'His motto, 'Cameron believes in miracles,' has proven true,' said his mom, LaDora Twitty.
She said he's had tutors and done a lot of the same class work and read a lot of the same books as his classmates, but he'll be happy for everything to get back to normal.
LaDora Twitty, who moved to Cincinnati with Cameron, resigned from her job as principal of Prendergast Elementary School in Ansonia to care for Cameron'as doctors feared that in that job she'd be exposed to many germs through students.
Michael Twitty, a New Haven public schools official, spent the summer in Cincinnati with his son and said he was blessed that coworkers donated vacation time so he could take many trips out to see Cameron during the year.
Michael Twitty said he learned from his youngest son to 'never give up.' 'You have to keep the faith,' Michael Twitty said.
Cameron's continued belief in miracles ' despite setbacks he experiencied along the way 'has been contagious to many. Family friend Carroll Brown ' who as president of the West Haven Black Coalition spearheaded many fundraisers for Cameron's cause, raising thousands of dollars ' said, 'When he (Cameron) did not lose faith, it kept my faith strong.' Cameron'solderbrother, Corey, a Dean's List student at Connecticut College, said Cameron's close call has taught him to enjoy every moment they have together and to live life to the fullest.
'I spend as much time as I can hanging out with him,' Coreysaid. ' It makes you appreciate and cherish the time you have.'
Cameron can talk potassium, magnesium, feeding tubes, lethargy and other medical jargon better than most adults, but he has no interest in the medical field as a future, because he says he's tired of hospitals.
Published Monday, 31 December 2007 on The New Haven Register (nhregister.com)
Written by Pamela McLoughlin
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