~EB Memorials~
Recessive Dystrophic
Recessive Dystrophic EB is particularly severe and mutilating. Large bullae present at birth and heal slowly, with a thick crust and scars. Fusion of the digits and mittenlike scars result encasing the hands and feet. Blistering of the oral mucosa, larynx, and eye may cause great disability as well. Nutrition is often a difficult problem, with poor intake and increased protein loss through the skin complicated by anemia and chronic constipation. Squamous Cell Carcinoma (skin cancer) of the skin or mucosa are seen in early adulthood and are a common cause of death. Most patients with moderate to severe forms of Recessive Dystrophic EB rarely reach their 30th birthday, and can succumb from reasons as varied as severe anemia to heart failure. The fragility of the skin is also explained by the observation that anchoring fibrils are decreased or absent in lesional and nonlesional skin in Recessive Dystrophic Epidermolysis Bullosa.
Edward Paul Kling
Edward Paul Kling was born on September 20, 1957. He was the middle child and only son. He was born with Recessive Dystrophic EB. He grew up in the Cleveland, Ohio area and graduated with a Bachelor's degree in Telecommunications from Kent State University. Ed was the producer of the Rainbow Channel at Rainbow Babies and Children's Hospital of Cleveland. Ed was a very creative, accomplished and funny guy. He passed away on October 4, 2001 at the age of 44. He left a loving wife of 10 years and a beautiful daughter. He is truly missed by his family, friends, and coworkers. A plaque now hangs in his honor at the hospital where he worked with the words "Do just once what others say you cannot do, and you will never pay attention to their limitations again."
Email
Ed's sister Tami
Kelly Mitchell
Kelly Mitchell was born on November 29, 1986 and passed away in 2002. She had the Recessive Dystrophic form of EB and resided in Muscle Shoals, AL with her Mother Denise and stepfather James Blessing and stepsister Faith.
Katia
Katia Sergi was born June 9, 1971 and passed away in early January 2003. She had the Recessive Dystrophic form of EB. She lived in a city called Pellaro, in the region of Reggio Calabria in Italy. She liked to listen to music and spend time with lots of people. She said that her best medicine were her friends! She was not working, but she hoped to be teaching Philosophy in High School, as she had a degree in Philosophy since 1996. She lived for the moment and stated that she never surrendered to EB because the more you do, the worse it gets!
These are my friends! In the first bottom row, from the left, Ettore (RDEB) with mom Giuseppina (she was extra-close to them!), Maria (her sweet friend), Mariella (a friend she got from Giuseppina!), Flo (she accompanies her to conferences and made her laugh!), Nino (he taught her everything about computers, and not only that, he was one of her best friends!), Annamaria (she had known her forever and she helped her get her drivers license!). From right to left on the second row: Franca, Carmelo (with which we organized a youth group in church), Andrea (an old friend from high school), Maria Rosaria, Giuseppe, Alessandra (next to her), Francesca (doctor friend), Francesca, and finally Mr. Massimo!!
Andy Burgy
Andy Burgy was born December 30, 1993 with his fraternal twin Alex, who is EB free. He became an angel on March 25, 2003. He had the Recessive Dystrophic form of EB and lived near Madison, Wisconsin with mom Mary Jo.
Email Andy's
mommy!
Click Here to visit his memorial page
Chuck and Christine Anderson
Chuck and Christine Anderson had the Recessive Dystrophic form of EB. Both children suffered deformities of the hands and feet, chronic anemia, malnutrition, and growth retardation. Neither child ever weighed more than 84 lbs. Near the end of their lives, they suffered as much as 75% of their bodies in open wounds. Relief came only when they were sedated to the point of sleep. Chuck died of skin cancer (another side effect of the disease) at age 27, (he was born on December 19th, 1961) and Christine died of heart failure at age 14 on October 16th, 1993. Chuck and Christine have one surviving brother, EB free.
Their remarkable parents are Gary and Lynn Fechser Anderson, which founded the EBMRF (EB Medical Research Foundation) in 1991. The EBMRF is a nonprofit, sole purpose foundation dedicated to the support of medical research of Epidermolysis Bullosa (EB)--its causes, its cure, and the development of successful treatments.
Eric Hanlon
ERIC HANLON was born in Cincinnati Ohio on October 2, 1981. He was diagnosed with Recessive Dystrophic Epidermolysis Bullosa at birth. His father and mother at that time were only 18 yrs old. It did not take long for Eric's disease to make strong effects on his life. His very strong will to still be happy was what made him shine like a brand new dime. As he got older the pain and disfiguring took a lot from Eric. He spent a lot of time in and out of Cincinnati children's hospital. He still got his G.E.D. and actually worked at the hospital for a short time. He loved music, the Bengal's football team, and he loved to make people laugh. Eric encountered blood infections and skin cancer which put him on iv antibiotics. He was also on high amounts of pain meds including methadone. This caused heart arrhythmia and he soon had cardiac arrest multiple times. Eric's heart stopped beating at 24 yrs old on Saint Patrick's day. May god be with him and everyone suffering from this horrible disease. Eric had three younger sisters EB free he loved dearly, and his dog Harley. On the picture above, Eric and his dad, Eric is holding his GED.
Cristina Perez
Cristina Perez was born on July 4th, 1983 and lost her battle with EB on October 7th, 2007. She had the Recessive Dystrophic form of EB called Hallopeau-Siemens (webbing type), and lived in Las Vegas, Nevada and San Diego, California.
Click Here to visit her website
If your child died from complications of EB and you would like his or her photo on this page, please email Silvia...THANK YOU!!
You might also consider joining the EBangels mailing list below, to chat with other parents or anyone that has lost a loved one to Epidermolysis Bullosa.
The Dance
Looking back on the
memory of
The dance we shared 'neath the stars above
For a moment all the world was right
How could I have known that you'd ever say goodbye
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Holding you I held everything
For a moment wasn't I the king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all
It's my life is better left to chance
I could have missed the pain but I'd of had to miss the dance
Playing:
The Dance by Garth Brooks
No
act of kindness, no matter how small, is ever wasted. -Aesop
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Last Updated: 01/02/2007