Brenda Gionfriddo

Birthday: August 29, 1974

Location: New Britain, CT, USA

Family members with EB: Jonathan, 1.5 years old, RDEB

Biography... in her own words:

I was born in Massachusetts to two wonderful parents. I am blessed to have a wonderful brother whom I love dearly and many other great family members. My parents divorced when I was very young but always made us their priority. My favorite place as a child was to go to my pepe's (grandfather) farm. I would love to sit and watch the animals and help my grandfather care for them. My true love is horses I love to ride them and just watch them, they are incredible animals and so beautiful. I also love dolphins, my dream in life is to swim with them just once.
Growing up I wanted to go to school to learn to train them but as I got older my true dream was and still is to be a registered nurse and work either in the maternity ward or in the OR.
But to really know me is to know my children I have had many things happen in life before my children but nothing compares to being a mom to me. They have been my joy and my life.
Ashley arrived Sept.19 1996 and Jonathan arrived into the world on May 11, 1999. Ashley was our first precious gift. The day she was born was the most incredible day of our lives, I couldn't believe I just gave birth to a beautiful baby girl. Then to be blessed with another, we were all so excited to finally have another baby and couldn't wait. He was 2 weeks late as was my daughter, which was 2 weeks too long if you ask me. I begged the doctor to induce me I was tired and miserable and just wanted to have my baby. I wanted to meet the bundle of love inside me and could wait no longer. So I went in the hospital on May 10 for my induction. In only 5 short hours the words it's a boy rang out and joy rushed through my body. I so hoped for a boy this time. As I was waiting for them to let me meet my little angel I had no idea anything was wrong. It was taking longer than it should and my husband was much too silent, so I knew in my heart there was a problem. I screamed out what is wrong and all I got was it is okay they are just checking him, but I know when you call a physician's assistant in the room there is more than checking going on. He asked me if I had herpes about 4 times and it was getting me mad because I knew I did not have herpes. Brenda with hubby Dominic and son Jonathan, RDEB and daughter Ashley, EB free.I just wanted to know what was going on. Finally they laid him in my arms and he was so beautiful I saw nothing wrong with him at all and even a few hours later when I visited him in the NICU I still saw nothing. The next morning brought tears and hurt. The doctor said they believed he had Epidermolysis Bullosa. I had never heard of this before and was overwhelmed by the words. I visited him again and found he was in an incubator, tears immediately started to flow. I could not hold him nor touch my little baby I so longed to meet. Finally the diagnosis came back and it was EB. They told us it would be a very hard life for him filled with pain. I couldn't bear to think that my little baby would be in pain, I just wanted it all to stop, and I wanted to turn the clock back and do this all over and have him be okay. As the days started going by we learned how to put bandages on him and how to care for him the best we could. Then the day came to take him home. I was scarred could I do this on my own could I handle this. I felt that night a rush of relief go through my body. It must have been God telling me I can do it. I felt in that instant every thing would be okay. I was focused and clear and ready to care for my baby and just love him. I could tell from the start that Jonathan was a fighter. He was strong and good-natured. He was and still is all I could hope for. Today brings bandages and more blisters but happiness too. I have such a wonderful support group and many friends to help me through the rough times. Most of the support and help comes through people I have never met but the bond that we share can never be broken. Those people are now my Internet family and always will be. They hold a place in my heart that can never be replaced. Although I still have a hard time emotionally, I have learned to live and love and just be happy. Life with Jonathan is not always filled with smiles and laughter but it is filled with love. My 4-year-old daughter keeps saying Jesus will help brother and make him better. I don't know when or if it will happen but I know that one-day there will be no more tears of pain, no more bandages, and no more blisters. There will be a cure and when it comes there will be tears of joy.

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