This page is dedicated to the ACHA family and friends whom we have lost. You can read their profiles here. We also invite you to submit a memorial on someone you loved who lived with ACHD for this website.
Please send your memorial submission to firstname.lastname@example.org. Include the name of the person you are memorializing, along with your name and contact information. We encourage you to send a picture, but that is optional. Please keep your submission to 500 words or less.
Karen (Klein) McNulty was a co-founder and the first president of the Adult Congenital Heart Association (ACHA).
She was also the first chairperson of the newsletter committee and was one of the original editors of the newsletter and co-chair of the first ACHA National Conference in September 2000. As an organization, ACHA owes its solid foundation to Karen's vision, intelligence and dedication. This special fund was created to honor her memory; Karen strongly believed that it should be possible for everyone to attend an ACHA conference regardless of their circumstances.
Many congenital heart defect survivors face economic hardship due to their lifelong cardiac disability. Our scholarship recipients tell us that attending an ACHA National Conference is a life-transforming event. Since our first National Conference, ACHA has not only kept registration at less than half of conference costs, but has also fully funded travel scholarships for eligible applicants. A donation to the Karen McNulty Heart Heroes Scholarship will help continue to make this possible.
Click here for ACHA's dedication to Karen McNulty.
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.
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
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.
All my love to you Dava, I will always miss you
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)