Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

In Memory

This page is dedicated to our loved ones whom we have lost. Family and friends who have lost loved ones with a congenital heart defect are invited to submit a memorial for our website.

Please send your memorial submission (photo optional) to info@achaheart.org with the name of the lost loved one, along with your name and contact information. Recommended length of the submission is 500 words or less.

Karen Klein McNulty (1974-2005)

Karen (Klein) McNulty was a co-founder and the first president of the Adult Congenital Heart Association (ACHA). To learn more, view our Dedication to Karen McNulty.

Bonnie Burke (1957-2001)

Bonnie was born on February 16, 1957, with pulmonary atresia, pulmonary hypertension, tetralogy of Fallot, and anemia. She had a BT shunt in 1986 at Hahnemann Hospital in Philadelphia, PA. She had many battles with chronic and acute pneumonia over the years and tried to become a candidate for lung/heart transplant. Bonnie passed away on April 13, 2001, at age 44.

She loved life and always expressed joy and appreciation to everyone she met. I met her in 1993 while my grandmother was in failure in the hospital and she asked me if she could cook dinner for me sometime when she got out of the hospital. From there, our love blossomed and grew. She had a way of opening your heart with her sweet tenderness and kindness. Each day, which appeared to be a road to hopelessness with her health, she asked God unselfishly to strengthen her to be here longer. She loved the simplicities of life: knitting, crocheting, and needlepoint. She was so thankful and easy to please.

Bonnie was always self-conscious of her seemingly childlike appearance and voice. Sometimes she become very upset over what other people thought of her, but she was very mature in other ways. I always reminded her she was a child of God with her illness and that she should not be ashamed of her appearance. I consider it a blessing from God to have had the opportunity to know her and to have her in my life.

Forever faithful in Love, your husband Skip.

Steve Catoe (1966-2010)

Steve Catoe was a long-time ACHA message board moderator and advocacy volunteer, and the inveterate blogger at his “Funky Heart” site. For more information about Steve, please click here.

Nighat (Yasmine) Irshad (1969-2001)

Dava JeNean Osborn Jones (1965-2000)

I will forever remember Dava as being a sweet, loving and kind person. Someone you could tell anything to and know she would listen to every word. Dava had uncorrected tetralogy of Fallot and died suddenly, but peacefully on June 20, 2000; she was only 34.

I first met Dava on the ACHD list and became friends quickly after. We had a great deal in common and shared the same beliefs. Because of that, it makes it a little easier to get through her passing.

Dava will be missed every day by her family and friends, but those that knew and loved her know that she is at a much better place and looking upon us with a big smile and telling us, "I love you." She always cared about everyone more than herself and any problems she did have, she never let you know, until you dragged it out of her . . . She never complained and even if she wasn't feeling well, she wanted to talk about you. She really cared more for others then herself and that's what makes her such a special person and someone I will never be able to forget.

Dava will always be my dearest friend, even in death, and I know when I go out into my garden, look at my favorite flower, smell the scent of my garden, Dava is there with me. She really loved her garden. If you want to feel close to Dava, just go outside and sit in your garden. You will feel Dava surround you in a big warm hug. She is one person that is very hard to let go, but we must.

The poem that I found, I found for myself and for those that loved Dava. Think of her saying this when you read it:

Miss Me, but Let Me Go
When I come to the end of the road
and the sun has set for me
I want no tears in a gloom-filled room,
why cry for a soul set free?

Miss me little, but not too long
and not with head bowed low.
Remember the love we once shared
miss me—but let go.

For this is a journey we all must take
and each must go alone
It's all a part of the master plan
a step on the road to home.

When you are lonely and sick at heart
go to the friends we know
Bury your sorrow in doing good deeds
miss me—but let me go.
—Author Unknown

All my love to you Dava, I will always miss you
—Lisa Villano

MaryJo MeKash (1964-2000)

Dealing with Grief and Feelings after Losing a Friend to CHD
I recently lost my very dear friend, MaryJo MeKash, to CHD. It was a death that had no warning. Perhaps some of you have experienced this kind of loss. If you have, you know what a personal, heartbreaking loss it is. It is one that is different than losing a family member, or even a friend who does not have CHD. Because this kind of death hits so close to home, for us the hurt and anguish is very profound.

Mary Jo was the first person I ever met with CHD who became a dear friend to me. We wrote, we e-mailed, we phoned almost on a daily basis. Her pain was my pain. I knew exactly how she felt when she would say, "Boy, today I had a great day, I was so full of energy," and of course, when there were those all-too-often "bad" days, I had been there, too. I had had those same feelings. Maybe we develop such a strong connection to our friends with CHD because we understand one another so well. We have walked in one another's shoes, and the bond is deep and heartfelt, like no other friendship one could have.

When I received the news of MaryJo's passing, I felt as if I had lost a part of myself, a part of who I was, a constant in my life was gone. Gone from the same affliction we dealt with "together." A death from CHD takes us so close to our own mortality. Today as every day since she passed away I will think of her, her sense of humor, her love for life, her stubbornness, and her support. And I will think of how grateful and blessed I am to have been able share such a close bond with another person.

I know she would not want me to sit back mourning and crying, but continue our fight-the-fight with CHD. I will do that. My dear friend MaryJo, you will be a part of me forever. I have come to understand that it is not what we do, where we go, or what we have in our lives that is important, but it is the people we meet along the way that count. Some people come into our lives and quickly go, others stay awhile, leave footprints on our hearts, and we are never quite the same.

—Robin J. Layman

Matthew R. Narby (1972-2008)

Anyone close to Matt knew that living for friends and family and especially his girls Victoria and Gracie was his top priority. Matt never complained about the daily trials of life and loved to talk sports (Buffalos Sabres, Cleveland Indians, Buffalo Bills, and Cleveland Browns), politics to anyone up for it, religion, history, and trivia. His sparkling enthusiasm for life was awe-inspiring.

Matt joined ACHA's online support group back in 1998 or 1999 before he had his second surgery to repair a leak from his original Mustard Procedure in 1972 to care for transposition of the great vessels. He always felt lucky to make it this far without any major stumbling blocks and his unexpected passing was a very sad blessing. We are happy that he is experiencing the joys and love of heaven without any long-term suffering. Matt was very fortunate to do all the things he loved even on the day of his death. We miss him every day, but know he is saving a spot for us and will welcome us one day with open arms.

Matt, heaven is so lucky to have you!

—Tara Narby (Wife of Matthew Narby)

Judy Norwood (1938-1998)

Every year in the month of April, thousands of people flock to Boston, Massachusetts to either watch or take part in the annual Boston Marathon. The marathon covers a distance of 26.2 miles from Hopkinton, Massachusetts, to Copley Square in Boston. This is one of the most popular marathons in the world. The winner gains a great amount of money, and on his or her head is placed a Laurel Wreath. The Laurel Wreath is an emblem of honor and of achievement.

There are many who deserve a Laurel Wreath, but they are unknown to the world. They are people who are running in their own marathon. It is not a marathon that will end in 26.2 miles, it is a marathon that will last a lifetime. It is not a marathon for money or reward, it is a marathon that is run to stay alive. They are people who are have Congenital Heart Defects—CHD. Every year that they live is cause for a Laurel Wreath.

This newsletter is a Laurel Wreath for them.

—Judy Norwood

I began corresponding with Judy not long after she joined CHIN's ACHD listserv. At the time, I was one of a small group of people trying to put together an organization for ACHDers, which later became ACHA. One of our projects was to put out a newsletter, which at that point was in need of a title.

Judy was excited about the idea of a newsletter. She believed that the printed word was the best way to get the word out to other ACHDers. She wrote the passage above and sent it to me along with potential logo designs for our organization. When I read it, I realized that she had given us a name for our newsletter—The Laurel Wreath, as well as a logo.

Judy quickly became one of my closest friends. I came to rely on her wisdom and advice. I even began to refer to her as "Grandma." She was an inspiration to all of us.

I spoke with her for the first time shortly before she was admitted for her last surgery. When she answered the phone, she laughed and said, "So, you ARE real." We talked for about two hours. She was nervous about the surgery, but had great hopes that it would improve and extend her life. She told me that she was going through with it because she had a lot left she wanted to do, including finishing her autobiography.

I was looking forward to talking with her again, and visiting her once she had recovered. Her passing on December 23, 1998, came as a great shock to me. I miss her a great deal, but I know she is with the Lord.

It is important to remember that Judy would not want us to give up hope. We all must continue to support one another in our struggles with CHD and with life. She would want us to remember her with joy, not sadness. She asked that donations to ACHA be made in lieu of sending flowers.

—Karen L. Klein

Steven B. Nowaczyk (1981-2008)

A wonderfully talented and creative young man, Steven passed away at the age of 26 on Friday, March 28 of 2008, after having been born on April 24, 1981, in Saint Petersburg, Florida.

Steven was the son of Steve and Penny Nowaczyk and the brother of Joshua Nowaczyk and Roger Garrett. Steven was the loving father of Camron Nowaczyk, age 5, whom he had sole custody and support of. He lived in Muncie, Indiana and graduated from Winchester Community High School in 1999. Steven loved wrestling, UFC, football (Go Colts!), fishing, playing basketball with his younger brother (Josh), and music. Some of his closest friends also knew him to be a great poet and artist. He loved to have fun and spend time with his family especially his son Camron, nephews Chase Garrett and Jaeden Nowaczyk, as well as his niece Paijah. Unfortunately he was not able to spend the time he would have loved to have had with his latest niece, Leilianna Nowaczyk. All Steven wanted was to have a loving person to spend the rest of his life with, children to love, and a home to call his own in Florida.

Steven will be missed dearly by his loved ones, but he will never be forgotten. We will reunite with you soon. Steven passed away in the Ross Heart Hospital of SIRS while awaiting an LVAD & Transplant.


Stuart Shire (1962-1999)

Stuart Shire died recently at his home in San Francisco, California. In 1988, Stuart, along with two friends, started The Heart Connection, the first support group for ACHD patients in the United States, in Oakland, California. When Stuart was a teenager he wrote and published a pamphlet for children with CHD, "So You're Having a Heart Cath." The book was recently re-issued by Pittsburgh Children’s Hospital. In spite (and perhaps partly because) of his illness, he was a talented writer, musician, and public relations professional. He will be greatly missed by his friends in California and elsewhere.

—Joyce M. Steinlauf

Fran Shworles (1943-2000)

Fran Shworles passed away on March 4, 2000. She was an inspiration to everyone that knew her and will be dearly missed by everyone on the ACHD and PDHeart listservs. Fran was a 55 year old survivor of tetralogy of Fallot and touched many lives and will continue to touch our lives, even in her passing.

There are really no words to describe what kind of person Fran was, but we all should be happy to know that we have one more person watching over us, waiting to greet us when our time comes.

Fran once said, "While in my coma I can remember walking by a river with a nice man and we talked. He had a white robe on, a beard and long hair. We walked on the greenest grass I ever saw. I remember my coma to this day, as I believe I walked with the Lord." Well Fran, now you can walk with him for eternity. Heaven is a better place now that you are there.

There's nothing more that can be said about Fran, so this poem I found is how I will end:

The Day God Called You Home
God looked around his Garden and found an empty place.
He then looked down upon his earth and saw your loving face.
He put his arms around you and lifted you to rest.
His Garden must be beautiful, he always takes the best.

He knew that you were suffering, he knew you were in pain.
And knew that you would never get well on earth again.

He saw your path was difficult, he closed your tired eyes,
He whispered to you "Peace be Thine" and gave you wings to fly.

When we saw you sleeping so calm and free of pain,
We would not wish you back to earth to suffer once again.

You've left us precious memories, your love will be our guide,
You live on through your family, you're always by our side.

It broke our hearts to lose you, but you did not go alone.
For part of us went with you on the day God called you home.
—Author Unknown

We love you Fran and we will miss our "Heart Sister."

—Lisa Villano

Darren Singletary (1969-2000)

Darren was a special person. He touched so many peoples' lives. He always had time to listen to others and take the time to help if he could. He tried to help them to have faith in God and to have the faith to carry on.

Darren was a very special son and father.

—Sandra Singletary

Cynthia Solomon (1947-2014)

ACHA is saddened by the loss of Cynthia Solomon, who is fondly remembered for providing personal health records (PHRs) as an important resource to the congenital heart patient community through the FollowMe and Follow My Heart programs.

Emily Swearingen (1971-2013)

Emily Swearingen died on May 27, 2013, at the age of 41, from complications related to a heart transplant. She was a graduate of Kansas State University and a huge Wildcat fan. As an avid golfer, she once played in Ireland. Proud of her Irish heritage, she proclaimed herself to be the "World's Tallest Leprechaun." Her sense of humor was an inspiration for all who knew her. An ACHA Heart to Heart Ambassador, the below is from Emily's profile:

"I was born with tricuspid atresia with atrial and ventricular septal defects; I had a Potts shunt at 11 months. My childhood was pretty uneventful; however, I did things a little backwards and saw an adult cardiologist my entire childhood. I finally started seeing a pediatric cardiologist at 26 and transferred my care to an ACHD cardiologist in 2007. In 1999, I had the Glenn procedure. In 2000, I was put on a heart transplant list but taken off after two years. Eventually, I will need a heart/lung transplant because I have pulmonary hypertension and stenosis. I have been able to do the things I’ve wanted growing up and even in adulthood, such as playing golf in Ireland about 9 years ago – walking the entire course. I came upon ACHA and have fallen in love with it because I never knew anyone with CHD nor had anyone who understood what I have gone through. I became an ACHA Ambassador to help others like me who think they are all alone, to provide them encouragement and to be a sounding board. I am happy to be living each day."

Laurie Tobin (1955-2000)

It is with great sadness that I bring you the news that Laurie Tobin (Karz1@aol.com) passed away on Tuesday, November 14, 2000. She was born in August of 1955 with single ventricle. She also had pulmonary hypertension and insulin dependent diabetes. She is survived by her partner Karen Zimmerman, her mother Sherry Tobin, her sister Lisa Morris, and her niece Lindsay Morris.

As with a lot of us adults with CHD, Laurie's parents were told not to expect her to live into adolescence. But despite this, and after having Dr. Potts perform his shunt, she went on to accomplish many things. After graduating from high school, she attended American University in Washington, DC, and law school at Cardozo University in New York City. Laurie went on to open her own law firm in Woodbridge, NJ, which is now in the care of her associate, Andrew Maze.

But most of all, Laurie was my first on-line and ACHD friend. We met through AOL's CHD bulletin board and would "talk" in our chat room. We discovered we had a lot more in common than similar CHDs and the same cardiologist. It was not unusual for me to sign on-line in the late evening or early morning and be pleasantly surprised to find Laurie on-line too. We would chat for hours about everything from growing up with CHD, our families, to TV shows we liked or disliked, or whatever was on our minds. All of the sudden we would realize we had stayed on-line way too long, and we would reluctantly decide to go to bed before it was time to get up.

If I were to describe Laurie as a "nice" person that would be a great understatement. She was a very giving, loving person who had a love for life and was also a great listener.

Laurie, everyone who had the pleasure of knowing you will miss you very much. We will love you always.

—Diane C. Clapp

Melissa Trothen (1973-2000)

Melissa passed away just over three months after her corrective surgery for tetralogy of Fallot. She fought to recover for she wanted so much to feel better. She was looking forward to the cauterization that would help her to feel "like a million bucks." It was not meant to be.

In her 27 years, Melissa had an incredible impact on every life that she touched. She was always smiling, and was quick with a joke or sentiment to cheer someone's gloomy day. Always concerned about others, she rarely thought about her defects as disabling, and strove instead to make others happy.

Melissa's caring attitude was what lead her to co-found the Heart Defects Society of Windsor and Essex County (HDS) with Claudette Dugas and myself. When we began planning to form a support group, there was so much enthusiasm and so many ideas that we decided to become a charitable organization. We felt this would allow us to be able to create change and help all those with defects. A lot of this energy came from Melissa, and many of our ideas were given wings with her lighthearted manner.

I feel truly blessed to have met her and to share in something so wonderful and meaningful with her. Claudette and I will miss her terribly, but we, along with the other members of the HDS will strive to make this charity a success in Melissa's memory.

—Francine Robitaille

Tracey True

The following poems were written by Tracey True, who passed away in 2001.

My New Heart
By Tracey True

Take away my broken heart,
please do what you can.
Let me wake in the morning,
to watch the sun hit the sky.
Let me listen to the birds,
as they fly on by.
Let me wake to the new fallen dew,
and give me the chance to do the things I want to.
And at the end of each day,
when all things are said and done,
Let me watch it change from moon to sun.
Take my broken heart,
Please do what you can.

As I Sit and Wait
By Tracey True

As I sit and wait, I wonder,
who will have to die so I can live?
As I sit and wait, I wonder,
why does someone have to die so someone can live?
As I sit and wait, I wonder,

Michele Trunnell (1978-2001)

Nearly a month has passed and I still cannot believe that we lost our Michy. Michele Trunnell (MTrunn5402) died April 18, 2001, of complications from a double lung transplant. She had lived nearly four weeks after the transplant. She maintained her courage through all of it and gave us all a lesson on living and dying before she left us. I think of her often and wonder at such courage for someone so young.

I have known Michele since she was 17 years old. She died at 22—just three months short of her twenty-third birthday. I met Michele the second or third day I was on-line. I was new to the chat rooms and we met in a room called "Mutual Support on AOL." We had transplant and CHD in common along with pulmonary hypertension. Michele had secondary pulmonary hypertension from a repaired VSD. At the time I was looking into heart/lung transplantation. Despite the age difference, we became fast friends. A few days later I met Diane Clapp and the three of us often chatted in private rooms.

That was five years ago and we have chatted over the years and shared all our heartbreaks, triumphs, disasters and other things that make up a life. We have covered nearly every topic there was to cover. We talked on the phone several times—exchanged pictures, and finally met this past January. It was such a blessing to be able to meet her in her home and meet Travis as well. It helped me to picture her when we were on-line. I treasure that day and wish there could have been more.

To know Michele was to love her. She was funny and ROFLOL (Rolling On the Floor Laughing Out Loud) all the time on-line. She was one of the best chat hosts I have ever witnessed making everyone feel comfortable. She was just full of love and even though she was very young—she was an old soul. She was wise far beyond her years.

Michele accomplished a lot in her short stay here. She was a member of Rainbow and had many "sisters" in that group. She was an active advocate of transplant—educating, and working tirelessly for the cause. She started hosting a donor awareness chat and later renamed it the "recycle yourself" chat. She was a beloved member of the AllHealth network with AOL and loved by all. She was an active member of several chats. The gap created by her loss is not one that can be filled by another, but must be filled with her memories.

Michele leaves behind her husband and life partner, Travis, her mother and stepfather—Cindy and Robbie MacDonald and her sister and brother—Marcey and Bobby and their families and a host of on-line and life friends that loved her and will miss her forever. When I am at my saddest, I try to think of her running or riding a bike—doing anything she so longed to do and never could down here. I love you Sweets—see you again someday.

—Sheri Maxwell

George Warren (1947-2013)

The ACHA community was deeply saddened by the loss of longtime ACHA board member Dr. George H. Warren on April 29, 2013. For more about George's life, please click here.

Howard (Chaim) Weinstein (1964-1999)

Howard Weinstein passed away on April 23, 1999. While he was affectionately known to members of the AOL ACHD chat and ACHD listserv as "Howie," his friends and family called him by his Jewish name "Chaim," meaning "life." Those of us who knew him know how appropriate the name Chaim was, as he was always full of life and good humor. I had the opportunity to meet Howie and his wife Leah in January of this year. We had a wonderful time. He will be missed by all of us. Please keep his wife Leah in your prayers.

—Karen L. Klein

Heidi L. Wilkinson (1955-2006)

Heidi L. Wilkinson, 51, of Hudson, died unexpectedly Wednesday, August 2, 2006, at Marlborough Hospital, after being stricken ill at her home.

Born in Marlborough, she was the daughter of Robert P. and Erika K. (Waldmann) Wilkinson and lived in Hudson all her life.

Born with a life-threatening congenital heart defect, she underwent many surgeries and bravely fought off repeated illnesses that could have caused her spirit to weaken, but constantly rebounded with her always-positive attitude.

She was a lifelong patient of the cardiac care program of Children's Hospital Boston and an active member of the Adult Congenital Heart Association of the hospital. Until last year, she devoted many hours as an editor to the quarterly newsletter.

Miss Wilkinson was employed as an associate at Stop & Shop in Hudson and previously worked for the former Shaw's Supermarket.

She was an active volunteer for many years at Marborough Hospital.

Besides her parents, she leaves and uncle, Donald I. Wilkinson of North Carolina; three aunts, Irene M. Colonie and Helene E. Wilkinson, both of Florida, and Evelyn G. Sullivan of California; and several cousins.

She was the sister of the late Peter Wilkinson.

What Life Is To Me (By a 14-year-old freshman)
My philosophy of life is not complex. On the contrary, it is I think, rather simple. I am a realist, not an idealist. I try to look at today's world objectively. I take life for what it is, not what it was. The past is wonderful to reminisce about, but no good to live in. I have to keep up to today's way of life or fall far behind.

Today's life is too fast though. Sometimes I, and probably a lot of other people, become confused when everything is thrown at one all at once. Instead of accomplishing my homework some nights, I waste my time worrying about all the things I have on my schedule. It then seems as if my brain is on Cloud Number Nine glaring down at me, "Get to work!"

I seem to get less done when I have a lot on my mind than when I don't, yet, when "my life depends on it," I work well under pressure.

Have you ever taken a walk in the woods by yourself? Lain down in the brown leaves that smell so good? Just thought about the wonderful world you live in? I often have. It feels good to just get away from all the rushing and bustling of life that is located just a few thousand yards away.

I have been lucky. Life has given me hardships, it has also given me pleasure. This writer has gone through a number of hospital stays, including several for surgery. But life has provided the medical knowledge to snatch me away from the clutches of death, even though I am not afraid of it. In spite of illnesses, etc., I must truly say . . . "I am glad to be alive." The little moments of joy I experience everyday are worth all the illnesses twice over. I am glad to be alive.

—Heidi L. Wilkinson

Jim Wong (1955-2010)

Jim Wong served as ACHA's Board Chair, led ACHA's first Research Committee, and served as long-time moderator for ACHA's on-line discussion forums. Jim gave tirelessly to the congenital heart community, and was passionate about the potential for science and technology to improve the well-being of congenital heart patients. For more information about Jim, please click here.