2017 Stepping Out Philadelphia PA (Delaware Valley Chapter)

Mom holding Jeni- thank you for making this possible!!
Mom holding Jeni- thank you for making this possible!!

Bernie's Yellow Roses

Thank you for joining Bernie's Yellow Roses!

As you may already know, Bernadette Cunningham was my mom, my hero, my best friend. She passed away in 2010 at age 60 after a very long painful battle with this terrible disease. She was always strong and positive through it all. We walk in rememberance of her, of the people who have lost their lives or cherished family members to this disease, and for those currently suffering with this disease- to give them hope for a cure!

Your help last year was greatly appreciated. Your support is the reason that I have the memory of the smile on my Mom's face when my daughter Jeni was born. It's a moment I will never forget and I thank you for your generousity that helped provide for the research that led to the development of the medications that allowed her to be there that day. Please continue to support us in our dream to find a cause and cure for this disease! Please join us as we walk in her honor and/ or donate to our fundraising efforts to help other patients' daughters also have such a very special memory that you have allowed me to have. Thank you again for your support and hopefully this year will be our biggest fundraising year in my Mom's honor to hopefully find a cause and cure for this dreadful disease!

About my Mom: She was born in NY in a family of 10. After graduating from high school, she enlisted into the US Marine Corps and served as a secretary in the Pentagon. She moved to NJ after serving. She started having medical problems in the early 80s but was not immediately diagnosed with scleroderma (a common occurance with this disease). Her hands and fingertips would turn dark purple sometimes black, and she would get ulcers in her fingertips. It became difficult just to touch things. Working and raising three children became challenging. She went to see a rheumatologist and was diagnosed with Raynauds. At that time there was nothing they could do except tell her to take aspirin and suggest she try soaking her fingers in hot water. Although very painful, this provided some relief. Soon she started noticing blochy red spots on her face and arms after going out into the sun and her skin color darkened. Her doctors checked her many times for different diseases including lupus and MS, but it wasn't until suffering renal failure in the late 80s, that she was finally diagnosed with scleroderma, the disease with no cause, no cure. She continued having medical problems but it wasn't until 1997 when the disease attacked her heart. She suffered her first heart attack at 48 years old. Five years later, she suffered her second heart attack and had angioplasty and stents placed in her heart to allow the blood to flow to and from her heart. Three days after returning from the hospital, her foot swelled and turned bright red from blood not circulating properly. She had to have surgery in her left leg to replace an artery for a vein. The disease had strengthened and was attacking all her internal organs. In her final year, she suffered from pulmonary hypertension in her right lung and was on oxygen during any activity. She was constantly fatigued and had regular severe back spasms. The only thing that provided partial relief was taking painkillers and lying on a heating pad. She was taking numerous medications with her doctors monitoring them regularly through monthly visits and weekly blood tests. She always remained very grateful to her doctors, her family and her friends for all their continued help and support.

Her fight with scleroderma was admirable. She stayed strong and never let the disease stop her from what she wanted to do. The back pain she had was so severe that the pain management techniques left her with second degree burns on her back. Even still, she lived as if without pain. She had doctors appointments every week and had even become a case study at the hospital. Anyone who knew even a partial amount of what she was dealing with, called her courageous and a hero. Her doctors called her a miracle. She smiled, joked, and always made those around her feel at ease with her and this disease. In 1986, she was given only 6 months to live; but she said they were wrong. In 1998, she had a heart attack and was not expected to live through surgery. Her doctors told her it was a miracle that they would never attempt again. In 2001, her disease went into remission but came back very strong a few years later.

In 1986, after being told she wouldn't live 6 months, she promised she would dance with me at my wedding. At my wedding in 2007, when our mother daughter dance was ending, I whispered to her to make another goal and to be there when I had a child. In the delivery room, she stood by my side and was there to meet my daughter, Jeni, when she was born.

My Mom never wanted to be remembered by her fight with scleroderma. The daily battles she won with this disease were not who she was, just what she did. The first word that comes to everyone's mind to describe my mom is strong. She had a great sense of humor and the biggest heart of anyone I know. She never asked for anything but appreciated everything she was given. She was extremely generous and warm hearted. She was always smiling and would always greet you with a warm and genuine reception. She never let you feel down and she could always read your mind. She was a great listener and someone you could always talk to easily about anything. She was very creative and was always doing something special for someone she loved. She made sure you always knew how wonderful of a person you are. She had three children and (met three of her now eight) grandchildren that she loved very much and spoiled any chance she could. Her favorite pasttime was spending time with them, laughing and playing together. She enjoyed playing Nintendo DS and enjoyed shopping and doing crafts. She loved to visit her brothers and sisters and their families in NY.

She understood the reality of the disease but lived with strength and courage. For there is no cause, there is only treatment for symptoms, and there is no cure. But she remained hopeful, as do I, that one day research will provide a cause, a cure, and an end to the suffering that 300,000 people in the US with scleroderma are facing, not to mention the countless family and friends of those victims that suffer along with their loved one. For the benefit of all those people, for my Mom's family and friends, and for my Mom's honor, please generously donate to this page and/or your time to walking with us on Sunday, October 1,2017.

Thank you so much!

Betsy

To learn more about the Scleroderma Foundation, please visit http://www.scleroderma.org today!

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