Melissa Anne Centrella's story is that of the triumph of the human spirit.
Melissa Anne Centrella was a Nutley High School Graduate and resident of Kinnelon, NJ. Melissa left us in June of 2002 after a 20-year battle with dystonia.
Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body.
Though her physical abilities became increasingly limited in her battle with dystonia, she was determined to live her life as fully as possible. Melissa's life was filled with extraordinary challenges; but, she did not dwell on them, nor complain. Instead, she was grateful for her life. She focused her energies outward and made it her mission to help others. Through her mother Claire, Melissa helped establish the NJ Chapter for Dystonia in 1990 to help find a cure and better treatments for dystonia. She routinely displayed her generous spirit - she raised money during National Make a Difference Day to give women with cancer a day of pampering; she collected childrens' things for a struggling nursery school; she donated her own clothes to a victim of a house fire, etc. It is because of this spirit and drive that Melissa's story has continued to reach and inspire so many, including those within the world of entertainment. As Senators Lautenberg and Corzine noted in the congressional record, "Although there is not yet a cure for dystonia, we will continue the work of Melissa Centrella and remember her fight against this disease."
As a tribute to Melissa's life of courage and love, family and friends established Melissa's Hope, a scholarship foundation which awards several scholarships annually to New Jersey students pursuing careers in nursing, medical sciences or a medical technical field. In 2014, the foundation expanded its mission to provide grants for special needs children and their families.
More about Melissa, as told by her mother, Claire
Melissa was born on 2/21/1977 and was absolutely perfect. She was a wonderful child with so much love for everyone. We could take her anywhere and never worry about how she would act or behave.
At about 6 years old we noticed she held her arm up (bent at the elbow) every once and a while. We asked her pediatrician and she told us it was a habit and not to worry, that she would grow out of it. From the first moment, I never told anyone. I always feared she might have a brain tumor. I remembered how the brain was the central location for all movements. I kept this fear for an entire year. We kept asking the doctor about it; but, kept getting the same answer - and I certainly was hoping the doctor was right. While in first grade, she was writing and the teacher said she did not put her arm down to hold the paper while writing. She told us if it were a habit, she would have done so. Well, now the fear set in. My husband called our family doctor and he said that it sounded like it was psychological or neurological because habits don't last that long. He had us go to see a neurologist who did a CAT scan and then told us she had a form of Cerebral Palsy which not only affected her arm but her foot as well. He noticed that she dragged her foot slightly and when I went home and checked her shoes I noticed her left shoe was wearing more than the right. He told us not to worry that she would compensate as she got older since the damage was over and done. It felt like the end of the world to us and I cried for three days. Oh, if he was only right! I was then over at a class in New York City and got an emergency call from my assistant telling me our pediatrician called and that she had to talk to me. I called her back and she told me that her radiologist read the CAT scan and he believed she had a brain tumor...my worst fear realized. She told us we had to get her to Columbia Presbyterian Hospital the next day. Again, I cried all the way home as someone drove me to my house. I told my husband what happened and he said we would not go to Columbia because he believed the other doctor and that "since when does the pediatrician know better when she didn't realize it for a whole year?" I begged and begged him and said I could never forgive myself if she was correct, so he finally agreed. We saw another physician there who said she had an abscess on the brain and wanted to go in and do a biopsy. He and my husband then went down the hall to see another physician who felt she had had a stroke.
Now, with four different opinions, we would not allow the doctors to do anything to her. Instead we agreed to wait a few months to see if there was any change. Well, from around Thanksgiving (which was a very difficult one after hearing what we heard) to some time in January, I noticed Melissa began to drool. I was a wreck. We decided to take her to another doctor at Columbia and he felt we should hospitalize her to do tests. We did in March after her 7th birthday, and with the bone marrow, spinal tap and many other tests completed, a movement disorders doctor told us she had Dystonia. They didn't know much about it, didn't know what we should expect, but did say it would progress. She was in a dance recital in June of that year and in a wheelchair by December. It seemed her right side was now being affected and she would lose her balance and fall.
Our anguish only continued to worsen and every time she had a visible change for the worse it was like a slap in the face of reality and we always hoped that that was the last of the progression. It was not though. She eventually had difficulty doing anything by herself. She couldn't feed herself, wash herself, walk or even talk clearly. She became totally dependent on someone else. In 1992 she spent 5 months (and I stayed with her day and night) out of 8 months in the hospital...10 weeks one time, 7 weeks another time, etc. Her weight dropped down to 77 pounds and her stomach became blocked so she could not eat by mouth for 5 months. She had to have stomach bypass surgery finally. Melissa had every test you could imagine and each done several times...bone marrow, spinal tap, biopsies- rectal, skin, nerve, iron testing through her eyes. She was the first Dystonia patient to have an intrathecal pump implanted in her abdomen where morphine, Baclofen and eventually Klonopin were continuously sent through the spinal cord directly to the brain to help with the severe spasms, spasticity and pain. She had to be fed through a life port each night because her weight would plummet since she had difficulty chewing, swallowing and eating. She would often dislocate her jaw and have to have it reset. She hemorrhaged when they did the rectal biopsy (1 in 100) and nearly died. She was the first to get the Botox shots in her face, arms, legs, etc. to help with the problem but eventually became immune to it. She was once overdosed with Baclofen by mistake and was in a coma for 3 days.
And through all this she always smiled and worried about everyone else. She wouldn't pray for herself but instead prayed for others. She told me she was suffering for other people. She often said many profound things that our priests told us she was on a different plane than us. Her faith never seemed to waver and she accepted her disability with courage, dignity and love. She would tell me "Mommy I have a good life. Thank you for giving me a life. This is my life and I have to accept it." She was simply remarkable. She always lifted other people's spirits and inspired them to be better people. As naive to the world as she was, she was also very worldly in many surprising ways.
Nominated by her teachers and friends, Melissa received the first courage award from the Dystonia Foundation.
Melissa would give anything she had to anyone. One time when she heard this young girl's home was burned and she had nothing, Melissa asked me to get a giant Christmas bag and we went through her closet giving her clothes to this girl. She also wanted to help others so much that two years in a row we raised money during National Make a Difference Day to give women with cancer three gifts each... a shopping spree, a separate shopping gift certificate and a day at a spa. Another year we collected things for children and gave them to a struggling nursery school to help the families. This was Melissa.
She so loved life that she was happy with the smallest things. If you gave her anything she thanked you a million times. And she was always sorry for everything even though it was never because of her.
I had to constantly battle for her in school and other places because disabilities were not yet well understood or accepted properly. Melissa was tutored at home for the last 3 years of high school since she did not have the stamina to be in school all day. She would always tell me to tell people, "I graduated with high honors" because she felt people thought because of her handicap that she was intellectually challenged. People would talk slowly, loud or baby-talk to her and she despised that. Staring was another thing that often happened and she would feel self-conscious at first, but later accepted that also.
When she was 13, after I wrote to the Starlight Foundation, she was able to meet her idols Kirk Cameron from "Growing Pains" and Candace Cameron from "Full House" in California. It was a dream come true to her. We spent an entire day with the cast of "Full House" and then went to a taping of 'Growing Pains' where Kirk gave her a dozen roses. This began a beautiful friendship with the entire family and we returned to LA the next year as well where she enjoyed a birthday at both sets and at Kirk's mom's house. Then we were asked to attend Kirk's Camp which is now called "Camp Firefly" which brings families with terminally ill children together for a vacation of a lifetime for 1 week. Normally, children in wheelchairs are not included but they loved her so much that we were asked to bring her. We have now been friends for 28 years and Kirk & Chelsea Noble (his wife) have been spokespersons for Dystonia since 2004.
She also met Ann Jillian who became dear friends with us as well. When Melissa wanted to meet Rosie O'Donnell, I worked hard to make that happen for her. The most difficult, however, was getting her to meet Celine Dion. I called every week to Canada until they finally had us go backstage at her show to meet her, her husband and family, and be a guest at the concert. Melissa thought her mother could do anything, but I could not save her.
She was poster child for the Nutley Elks (another wish of hers) and the State of New Jersey, she was Bella Senorina for the Columbus Day Parade, and she was also a Poppy Girl for the Veteran's Day parade.
I always tried to have her feel good about herself because the handicap itself was devastating.
Her legacy is the foundation which gives scholarships to students going into nursing or medical sciences because we knew how the shortage of nurses affected our family dramatically. She has also left me with her mission to find an answer for Dystonia so that no other family has to live through what we did. She worried so much about the other children.
Well, I hope this is enough because I could go on and on as I recall what a beautiful person she was both inside and out. I know I will never meet anyone like her again. She was truly an angel.
Melissa, from her teacher’s perspective
I met Melissa and her family early in my teaching career as she came to a self-contained classroom of special needs students in a building that was handicapped-accessible. It was a challenging setting for her gentle soul because she was typical in every way, but physically limited, needing help in the bathroom and with communication. Melissa didn’t have learning or emotional issues, and her classmates did. I believe this is where her deep compassion and empathy for others began as she watched her new friends struggle with various behavioral/social and academic problems, Melissa quietly counted her blessings. She realized she was fortunate to have loving parents and a stable home and all of her needs met before tackling the demands of a school day. Many of her peers didn’t always come prepared and this was upsetting to her. Sharing a small classroom with ten others creates a family atmosphere and I can remember her offering to share her snack or lunch frequently. Brave Melissa didn’t seem to dwell on her own troubles as her motor abilities declined and she struggled each day with walking, eating and talking. Her muscles were not cooperating with her and in the years we were together she became wheelchair bound and relied on her aide, Lynn, to communicate.
Missy had developed a strong relationship with a boy in the class that was very sweet on her too. He was hard on the outside due to his circumstances at home, but found relief at school and in his friendship with Melissa. These two kids were only about 10 years old but each carried the weight of the world. Her friend ran away from home one night… Melissa was distraught at the thought of him being scared and alone out in the dark world. She called me and insisted that we had to find him. “We need to help!” she urged as I grabbed my keys to go looking. Hours of driving around and a call back to say that I was unsuccessful and ask if he had contacted her had Missy in tears about how unfair life was to him. To him…I don’t think it was ever about her. Melissa always counted her blessings in life. She amazed me every day. I can still hear her snorting laughter.
Melissa graduated from elementary school amidst the cheers of parents and students. She insisted to be on the stage in her chair while others stood singing. With help, she proudly stood as her class was called to be congratulated smiling broadly!
As remembered by Barbara Cameron in her book A Full House of Growing Pains, A Hollywood Mother's Journey
Dark-eyed Melissa Centrella seemed like a normal, happy, active child until she turned seven. That June, wearing a green and black dance outfit, her thick, black hair falling below her waist, she danced her heart out in a recital. By December, she couldn't get out of a wheelchair.
The doctors diagnosed her as having a progressive, painful, neurological disorder call Dystonia - a disease that causes twisting and spasms of the limbs. The muscles pull into themselves, doing the opposite of what they should. They contract when they are supposed to relax, and relax when they are supposed to contract. The result is that the patient cannot control what her body does - she is at the mercy of her twisting limbs. Melissa, an only child, had parents who devoted their lives to try to give her the best life possible. They contacted the Starlight Foundation, which called to ask her if she had three wishes. She did.
Melissa, in love with Kirk, never missed an episode of Growing Pains. She was also a fan of Full House. Speaking with much difficulty due to the disease, she said, "My first wish is to meet Kirk Cameron, my second wish is to meet Candace Cameron, and my third wish is to get better... in that sequence."
In January 1990, the second of her dreams came true as she spent a day on the set of Full House. The next day she would have her first dream come true in a visit to a taping of Growing Pains. I met Melissa and her mother as they were leaving the set of Full House. Melissa grinned with a beautiful smile that lit her eyes. She had so much life trapped in her tiny, bent body. I squatted to talk to her, sharing with her that during the next night's show, she would get to see Kirk go out on a date with Chelsea. "I'll send a package of goodies for you with Kirk tomorrow. Would that be all right?"
Melissa said, "Thank you," in a weak voice, but everything about her shone.
At the taping of Growing Pains, Melissa was in heaven. After the show, Kirk gave her a dozen roses and the package I'd prepared with items from the shows. She mustered up all her energy to tell Kirk, "I love you."
The following year Melissa came back to Los Angeles to see the shows again, this time for her fourteenth birthday. Both shows threw birthday parties for her with cakes. I invited the family to our house for dinner where I gave Melissa a party as well.
Our whole family adored Melissa. She exuded a peace and joy even through her painful spasms. Because of Melissa and many other incredible, special children, we first began Camp Callaway, which later transformed into Camp Firefly.
Tributes to Melissa,Congressional Record June 3, 2004
TRIBUTE TO MELISSA CENTRELLA Mr. CORZINE. Mr. President, today I wish to recognize and to remember an extraordinarily courageous young lady from New Jersey, Ms. Melissa Anne Centrella. It is with great sadness that I inform you that Melissa passed away 2 years ago. She was 25 years old when she died. In Melissa’s short time here on Earth she displayed an uncommon grace and dignity which we all should emulate. As a child, Melissa was like every young girl—she was cheerful, she loved her parents, and she loved to dance. However, Melissa was diagnosed at an early age with the rare disorder called dystonia. Dystonia is a neurological disorder characterized by powerful and painful involuntary muscle spasms that cause twisting of the body, repetitive muscle movements, and sustained postural deformities. Melissa lived with the constant pain of dystonia for 18 years. As the years passed, Melissa’s life became more and more constrained. She was eventually confined to a wheelchair and then bedridden. Melissa passed away from complications of this disorder. Melissa endured many painful medical procedures to assess and attempt to treat dystonia. She suffered through a series of spinal taps, intrathecal pump implantations, and the preparations for deep brain stimulation surgery. Melissa, on several occasions, was overdosed with her medication leading to seizures and once to a 3-day coma. Through all the pain, she accepted her suffering with dignity and never once complained. Melissa believed she was put on Earth for a reason, that God had a plan for her. That reason was to be a part of the mission to find a cure for dystonia, so that no one else would have to experience the torture that she experienced in her short life. Many in her position would have given up, but not Melissa. Melissa was relentless in pushing Claire, her mother, to establish the New Jersey Chapter of the Dystonia Medical Research Foundation, DMRF. The chapter today holds many events to raise funds for dystonia research and promotes awareness of dystonia. Whenever Claire became depressed or understandably overcome with distress, Melissa would gently prod her along and remind her of their mission together as a family. Melissa was the only child of Claire and August Centrella. I would like to salute Claire Centrella and her family for picking up the mantle and running with it in memory of Melissa. Melissa’s body lost its battle; however, her soul battles on in her mother and the New Jersey Chapter to improve the quality of life for others with dystonia. Melissa Centrella’s memory will live on in those of us she touched and in those who share her mission. Melissa will never be forgotten, and her mission will continue through her family’s and friends’ hard work and determination.
Mr. LAUTENBERG. Mr. President, I rise today to pay tribute and to remember a courageous young lady from New Jersey, Ms. Melissa Anne Centrella. Sadly, Melissa passed away 2 years ago, at the age of 25, from complications due to a disease known as dystonia. Much of Melissa’s short life was dedicated to battling dystonia, which affects more than 300,000 people in North America. Melissa was diagnosed at an early age with dystonia, which is the third most common movement disorder after Parkinson’s disease and tremor. This neurological disease is characterized by powerful and painful involuntary muscle spasms that cause twisting of the body, repetitive muscle movements and sustained postural deformities. Although she endured many painful medical procedures to treat her dystonia, Melissa never once complained. Instead, she became a part of the effort to find a cure for dystonia, so no one else would have to experience the pain she suffered in her short life. Along with her mother Claire, Melissa worked relentlessly to establish the New Jersey Chapter of the Dystonia Medical Research Foundation. The chapter today holds many events to raise funds for dystonia research and promotes awareness of dystonia. I would like to salute the Centrella family for the work they have done to found and support the New Jersey Chapter of the foundation. Today, because of Melissa Centrella, her family and others who have fought alongside them against dystonia, we are closer than ever to a cure. Mr. President, it is important that we recognize the fight against dystonia. Although there is not yet a cure for dystonia, we will continue the work of Melissa Centrella and remember her fight against this disease.