Girl with rare disease to speak at Livermore Elementary School

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LIVERMORE — Students in Janet Ventrella’s fifth grade class at Livermore Elementary School will have a life changing experience this Thursday, in a positive way.

Spruce Mountain High School freshman Camryn Berry will be speaking to them about her battle with fibrous dysplasia, an abnormal bone growth where normal bone is replaced with fibrous bone tissue. She will have an anti-bullying message in her speech, where students are encouraged to embrace those who might look, talk, or dress differently than them. It will also help provide awareness of rare diseases.

In an e-mail, Camryn’s mother, Tammy Berry, remembered when Camryn was diagnosed.

“I remember the day just like it was yesterday,” she said. “It started on July 30, 2005, a Saturday, when we were outside on our back porch. We were sitting on a bench-type swing and Camryn’s head was in my lap. She opened her mouth to speak and I noticed that she had a large mass on the roof of her mouth.

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“The mass was hard, but not painful. We took her to her pediatrician the following Monday, Aug. 1st. He immediately ordered a CT scan. We waited all afternoon at Franklin Memorial Hospital and when the pediatrician finally called us in, I couldn’t believe what I was seeing.”

She said that Camryn had a huge black area on the CT where there should have been white. That was the tumor. It was roughly the size of a baseball on the left side of her head.

Camryn saw a specialist at Maine Medical Center, but it turned out that he said he couldn’t help her, and, in fact, his words were that no one in Maine could help her. This type of tumor was just too rare. Camryn went to Mass General for consultation. She saw Dr. Leonard Kaban at Mass General on Aug. 4th. Camryn had another CT scan, tons of labs, and more x-rays.

Surgery was scheduled for the following week because there was no way to diagnose the tumor without a biopsy. On Aug. 11th, she had her first surgery. Eight days later, the family got the final biopsy results: It was fibrous dysplasia.

While the good news was that it wasn’t cancer, the bad news was that fibrous dysplasia has no cure, and would plague Camryn her whole life.

The condition begins before birth, Tammy noted. It is caused by a gene mutation that affects the cells that produce bone.

Although the abnormal bone forms before birth, its presence is often not discovered until childhood, adolescence, or even adulthood. The gene mutation causes the cells to form an abnormal type of fibrous bone.

This fibrous bone gradually grows and expands over a period of years, causing a weakened area of bone. The area of weak bone can cause pain. This type of pain generally begins as a dull ache that is made worse with activity and lessened with rest. It can progressively increase with time. It can crack (fracture) the bone, and may lead to deformity.

The cause of the gene mutation is not known. It is not inherited or passed on to the children of the affected individual. No dietary or environmental cause is known. Severe deformity can lead to loss of vision or hearing when the facial bones are involved.

Surgical treatment is often necessary. Additionally, scooping out (curettage) of the FD is generally performed along with bone grafting. Over time, the bone graft placed in the defect often is absorbed and replaced with more FD. In Camryn’s case, her FD originated in her left maxilla and has crossed suture lines to now affect her left zygoma and orbit.

Camryn has had seven surgeries since her diagnosis in 2005. The first was for biopsy. The second and third were in January, 2007. Tammy explained that these were to de-bulk and contour the tumor, and to reconstruct her palate and left nasal airway (the airway was completely blocked).

In 2009, she then tried an experimental medication given at Mass General Pediatric Hematology/Oncology as a two day infusion, that she received every three months for a year. It was to reduce the pain that she was having because of the tumor.

Her fourth surgery was in August 2010. It was to de-bulk and contour the tumor, reconstruct her nasal airway, as it had obstructed again, and to reconstruct her left orbit. The tumor had displaced her left eyeball to the point that 75 percent of her orbit was affected. This was her most complicated surgery and involved a team of surgeons from both Mass General and also Mass Eye and Ear Infirmary.

In December 2010, she had her fifth surgery (this was done at Mass Eye and Ear) to lift and tighten the left lower eyelid, as it had become displaced due to the last surgery. In July 2011, she had her sixth surgery to reconstruct the palate (for the second time). In August of 2011, she started her second experimental medication to reduce the pain caused by the tumor. This was a one-day infusion given every six months at MGH Pedi Heme/Onc. The infusions were ineffective in reducing pain and slowing growth.

In December 2012, she had her seventh surgery to de-bulk and contour the tumor and reconstruct her nasal airway, as it had become obstructed for the third time, again causing the inability to breathe through the left nostril. She also started the third experimental medication in Dec. 2012 in an attempt to slow the growth of the tumor and reduce her pain. Camryn receives this medication as an injection once a month.

“We are very fortunate that our medical insurance now covers the cost of this medication (over $1,600/dose),” Tammy pointed out. “That wasn’t always the case and we have friends from around the country struggling with their insurance companies to get this medication covered so they can benefit from it.”

This medication has been instrumental in reducing Camryn’s pain and appears to have stabilized the growth of the tumor at this time.

At this date, the insurance company has denied covering any prosthodontict work.

“The only reason I mention the insurance problem is because insurance coverage issues are very common with rare diseases as so little research is done and there just aren’t enough patients to warrant more studies,” said Tammy “This has to change!”

In April of 2013, a group of middle school-aged girls from Canton, Georgia gave Camryn a standing ovation through a video. The standing ovation video came about in response to the RJ Palacio book, Wonder. Tammy mentioned that Mrs. Ventrella’s students had read the book and were looking to meet a real “Wonder Kid”.

In the book, the main character, Auggie, who has a craniofacial abnormality, receives a standing ovation after winning a medal for courage and strength at the end of the school year. One of the quotes from the book describes how much it meant to Auggie to receive empathy from his classmates:

And as I walked up the steps to the stage, the most amazing thing happened: everyone started standing up. Not just the front rows, but the whole audience suddenly got up on their feet, whooping, hollering, clapping like crazy. It was a standing ovation. For me.

The teacher in the book asks all the students to come up with a precept (words to live by) and Auggie’s reads: Everyone in the world should get a standing ovation at least once in their life because we all overcometh the world.

The first school to take that message to heart was a 5th grade classroom from Baltimore. They filmed themselves giving a standing ovation to a real-life Auggie, a boy named Peter with Goldenhar Syndrome.

Then, the girls from Georgia, who have a book club called The Princess Generation contacted the Children’s Craniofacial Association after they read the book. They wanted to send a standing ovation to a child with a craniofacial abnormality and CCA gave them Camryn’s name.

“They contacted me to find out her favorites and sent her a care package along with the video,” said Tammy. “One of their questions for Camryn was, ‘What is your favorite band?’ Her answer was One Direction, hence the One Direction song, ‘What Makes You Beautiful’ playing in the background of the video.

“Camryn was so humbled and grateful that a group of girls that didn’t know her would take the time to make her feel special! She became pen pals with the girls and still sends them letters from time to time.”

Camryn is very active at Spruce Mountain High School. She was on the soccer team and will be joining the track team this spring. Camryn has done the community play and is currently doing One Acts, which will be performing soon. She is a member of Robotics on the Spirit Team and is on the Envirothon team, Student Council, and takes four Honors classes.

Additionally, she is very talented in art, writing, and loves to sing. Camryn is a member of the Youth Group at her church and volunteers for the One Day To Serve event every spring. She occasionally sings with the Worship Team at church, and is a Junior Volunteer at Rumford Hospital. Also, Camryn has volunteered for several years at the American Heart Association’s Heartwalk every September in Rumford.

Tammy said that Camryn was very willing and excited to speak to Mrs. Ventrella’s classroom about her rare disease and how teasing has affected her.

“She knows that with knowledge comes understanding and empathy,” said Tammy. “And the more that people become educated about her disease and other diseases like hers, the less judgmental we become as a whole.”

Despite the illness, Camryn is a typical 14-year-old girl. She likes to spend time with friends, tweeting and texting. She fights with her brother on occasion and drives her parents crazy from time to time, said Tammy. While doesn’t want to stand out, she realizes that because of her disease, she is different and with that comes a responsibility to educate and inform the public about her rare disease.


Camryn Berry, who suffers from fibrous dysplasia, will be speaking about her experiences to students in Janet Ventrella’s fifth grade class at Livermore Elementary School.

Shown above is a scan of Camryn’s skull showing how she has physically been impacted by fibrous dysplasia.

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