Sunday, January 24, 2010

Fairfield Citizen Publication

Below is a copy of a recent article in the Fairfield Citizen sharing information about Alison and John's story as well as the upcoming concert.

'Angel' saves Sacred Heart University student's life
By Karen Kovacs Dydzuhn
Published: 01:06 a.m., Friday, January 22, 2010
Excerpt from the Fairfield Citizen
With a glowing complexion and infectious smile, it's hard to believe that Alison Cubbellotti, 20, has battled a rare liver disease called primary sclerosing cholangitis (PSC) and Crohn's Disease for nine years.
Despite an inner resilience and deep desire to continue nursing studies at Sacred Heart University (SHU), Alison's rapidly failing health forced her to withdraw from classes last year.
"My liver was failing and I was to the point where I couldn't get out of bed, I couldn't focus," Alison explained.
She desperately needed a liver transplant to survive, but the one family member who was a perfect match -- her brother, Stephen -- was eliminated last spring. During the transplant operation, Dr. Sukru Emre, a Yale New Haven Hospital surgeon, determined that Stephen's own liver could be at risk, so the procedure was discontinued. The Cubbellotti family was frustrated and frightened as Alison's liver continued to decline during the following months. They worried that her liver would completely shut down before a donor could be found.
In desperation, they sent out a viral e-mail blast pleading for potential donors to contact the hospital for a screening.
Their prayers were answered when a match was found. Although the anonymous donor, whom the Cubbellotti family refers to as their "angel," had never met Alison, he was a fellow SHU student. John, the donor, would never again be a stranger to the Cubbellotti family.
Next month several other anonymous "angels" from the Performing Arts Center of Connecticut (PACC) will also lend their support in a benefit concert.
The performance will take place on Saturday, Feb. 27, at SHU's Edgerton Center for the Arts at 7:30 p.m. Tickets are $20 and reservations can be made by calling the Box Office at (203) 372-2787.
"We wanted to do something to help," said Catherine E. LaChioma, executive director at PACC. Her daughter, Nikole, artistic director of the Trumbull Arts School and founder of the Parker Project dance troupe, has been "best friends" with Stephen and close to the Cubbellotti family for several years.
In addition, both Stephen and Alison had been enrolled in PACC classes and showcases.
"We decided to do the only thing we know how to do -- put together a benefit concert and raise some money and awareness for liver disease," said LaChioma.
At the helm of PACC, LaChioma has used her studio to support several local and national organizations, including those that benefit AIDS research and awareness. She strongly believes in teaching her students not just about the fundamentals of singing, acting and dancing, but also the importance of using their talents to benefit the community.
LaChioma and her students are now looking forward to supporting Alison, John and their families.
"All of our talented singers and dancers are excited to donate their time and energy to this wonderful cause," LaChioma said.
Nikole and Stephen will dedicate a special vocal and piano selection to John and Alison. Hopefully, LaChioma said, Alison will perform a song, too.
The concert will also include a special appearance by PACC's newly founded Show Choir and a performance by the Parker Project dance troupe, led by LaChioma.
All proceeds from the PACC benefit concert will be put into a special fund at Yale Hospital for liver transplant donors and recipients.
"There are so many expenses that you don't expect, but which add up, such as parking and food," Alison explained. "The donor and their families are already giving so much. We don't feel that they should also incur these additional expenses."
John's hospital stay was actually much longer than anticipated because he endured several serious complications following the transplant surgery.
Not wanting people to be discouraged from becoming a donor, John and his mother, Doreen, pointed out that his medical issues were unusual and tend to occur in only one percent of the cases.
"It's so important for people to realize, too, that people of all ages and all backgrounds could get liver disease," said Karen Cubbellotti, Alison's mother. "There is a stigma attached to liver disease with many people associating it with alcoholics and drug addicts."
This is, of course, not true. After all, Alison was diagnosed with the chronic illness when she was only 11 and realized over the past couple of years that the only lasting cure would be a liver transplant. Unfortunately, there are not nearly enough donors available for all of the needed transplant recipients, added Cubbellotti.
Coincidentally, Doreen's brother also suffered from liver disease. Unfortunately, he died from liver failure at the age of 16 because no liver transplant donors could be found.
Following the Cubbellotti's e-mail blitz, which was forwarded throughout the Sacred Heart campus, the Yale New Haven telephone lines were flooded with interested donors. After brief verbal screenings, some potential candidates underwent medical tests to determine their eligibility.
John recalls initially seeing the e-mail on his computer sometime in August, while he was still residing at his family's home in Somers, N.Y.
"I felt for this person," he said. "I knew that this was serious and, for some reason, I couldn't delete the e-mail. I finally worked up the courage to call in September and left a message."
At the end of September, he drove to New Haven for tests which included blood work, a CTScan and interviews with a social worker and psychologist.
It wasn't until John discovered that he was a match and wanted to move forward with the transplant that he talked openly with his family. Although they were obviously concerned about his well being, they also had a great deal of compassion for Alison and her family.
"I was definitely understanding about Karen's feelings," Doreen noted. "I remember how disappointed my mother was that a donor had not been found in time for my brother."
In Alison's case, too, the timing was critical. John hoped to have the surgery take place during the college's winter break. However, Alison couldn't wait that long.
The transplant took place on Oct. 19, 2009, and both John and Alison spent the next month in and out of the hospital as they dealt with various medical complications.
Since Thanksgiving, though, John's recovery has been slow but steady. Because he missed a month of classes, he has had to work hard to catch up.
John has been reassured by SHU's president, Dr. Anthony Cernera, that he would be able to make up his work and graduate with his classmates this May.
The two families could not say enough positive things about Sacred Heart's top administrator.
"He has been so supportive," said Cubbellotti.
The two mothers appreciated Cernera's visiting John and Alison during their hospital stay.
Also, when Cernera first learned about the pending liver transplant early in the academic school year, he called John into his office.
"He asked me why I was doing this," John recounted. "I told him that my parents always taught me to do what was right."
As he re-read the e-mail, John said that he "kept putting myself in their shoes."
"I kept thinking about how I would feel if this was my little sister," he explained.
Like John, Alison continues to grow stronger each day. As she reflects back on the outpouring of love and compassion from the community, and especially John, she understandably becomes emotional.
"At first, it was really hard because I was still recuperating and in a lot of pain," Alison explained. "Now, I can understand and be so thankful for what John has done for me."
In the past couple of months, the two families have become close.
Cubbellotti said, "It's going to be a long road for Alison, but there is no doubt that she is here today because of John."

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