Recessive Dystrophic


As always, if you do not want your photos posted, all you have to do is ask and they will be deleted. If you would like your photos added or updated, just send me an email at ebmomma at gmail.com (sorry, I am trying to avoid spammers!) and attach the photo you would like me to add with the following info: Full name of the patient, birth date, form of EB, where the family lives, and names of siblings (if any) and parents, along with any comment you would like to add.

Children (and adults!) with Recessive Dystrophic EB

  • Yasmin Elsamra was born on September 1, 1997 with RDEB. She lives in Egypt with her mother (hanaa), father (amr, who is a professor of Ophthalmology), and her three brothers free from EB (ali, hassan & hussein - twins). Yasmin likes very much drawing, coloring, singing, puzzles, and shares a lot of games with her brothers plus playing with plenty of barbies.

  • Nicole Marie Ibarra was born February 4, 2000. She has the Recessive Dystrophic form of EB and lives in Chamberino, New Mexico, with her parents: Kimberly and Ramiro.

  • Teodor Janosevic, was born on March 23, 2008. He has RDEB, HS. He lives in Belgrade, Serbia with his two years younger brother Maksim (EB free), and his mom and dad. He is lively boy, with strong character and vivid imagination. At the beginning of his life he had life dangerous infections and sepsis. Doctors said that he survived, just because he is a great fighter.

  • Natalee Haven RDEB lives in Vancouver ,WA. She was born on 8-1-10 and she has two sibling brothers, Shawn and Anthony Morgan EB free. Her parents are Janelle and Kenneth Haven

  • João Gabriel (Bido) was born September 19, 1996. He has the Recessive Dystrophic form of EB, the Hallopeau Siemens subtype. He lives in Belo Horizonte (Brazil) with his parents Cida and Beto, and with his older sister Mirinha.

  • Oxlee Jr. was born on August 25, 2001 in North Carolina. He was born missing skin on his hands and feet. Originally he was diagnosed transient, however, further DNA testing hinted towards RDEB. Definitive results were never reached on his DNA. Oxlee is an otherwise healthy, active child. He lives at home in NC with his daddy, Oxlee Sr, a US Marine and his mommy, Cynthia.

  • Taylor Kirin was born June 25, 1997. She has the Recessive Dystrophic form of EB and lives in Wayland, New York with mommy Sandy and sister Sarah, born in 1994, EB free.

  • Joshua Jaramillo was born on June 15, 1996. He has the Recessive Dystrophic form of EB, the Hallopeau Siemens subtype, and lives in Santa Fe, New Mexico with his mom and dad.

  • Bianca Maria Contreras was born on September 17, 2002. She was diagnosed with RDEB - Sub-Type Unknown, and lives in Miami Beach, Florida, with her mommy and daddy. She is such a blessing in disguise. She is a very happy and interactive baby! We do not know where we will be without her...Currently she has been diagnosed with a mild case of RDEB. Her main problem areas are her legs, feet, hands, elbows and mouth. No additional areas are involved.

  • Dalton Sky Legino was born Octover 5, 1993. Dalton has the Recessive Dystrophic form of EB, and our family lives in Haines AK. Dalton has a brother and 3 sisters, Jamion, (brother) Symaron, Nancie, & Shena (sisters) and myself Dezra (Mother, of course). I am Dezra Legino/Burkes, and Dalton's Mother. We live 27 miles outside a small town in the southeast of Alaska called Haines. At the time of Dalton's birth, I was told he had a rare skin disease known as Recessive Dystrophic Epidermolysis Bullosa or R.D.E.B. Dalton is truly one of the greatest lights in my life and such a blessing as I am sure your son or daughter is to you and they deserve all the best of what we as Mom's/Dad's/Family etc can find for them. I could not admire him more. The strength he shows me everyday is amazing. I have often sat and watched him and thought to myself that someday when I grow up I want to be as good as he already is!! To every Mother who is walking this path and to the one's that will come, "Hat's off to you Mom's! God Bless You!!!!" Daltons Likes & Interests--the human body and how it works, video games, bionicles, art/drawing, hanging out with his little dog Syrus, Medieval role-play, likes to speak Pig Latin (which drives mom nuts) His best friend Steven, Oh yes and most important "Chocolate" (It is a food group ya know Mom LOL) Favorite TV show is "Bleach." Goals--To become a video game designer & game system designer. Dalton, I and our family would like to say in closing here to all of you, May you always feel the sun on your face and have the wind at your back.... May the Lord smile down on you and hold you safe and warm in His faith and love.... And May Grandfather and The Spirits guide you and smile down on you always....

  • Zachary Alan Johnson (Zach for short) was born on Feburary 5, 2002. He has been diagnosed with RDEB. He lives with his mommy and daddy (Chad and Terasha) and also his dogs, Sammy and Mac and his kitty, Ally in Warrenton, Missouri.

  • Elizabeth "Lizie" Kaylee Fernandez was born November 19, 1994. She has the Recessive Dystrophic form of EB and lives in Forth Worth, Texas, with her family.

  • Avery Raymond Perez was born on November 2, 2001. He has been diagnosed with dystrophic EB (subtype unknown). He most likely has a more localized recessive form. He lives with his mom, Carrie, his dad, Ray, and 2 dogs Elli and Laney in O'Fallon, MO.

  • Harlee Suzanne Bass was born October 28, 1997. She has the Recessive Dystrophic form of EB and lives in Lynn, Alabama, with her parents: Eric and Suzanne.

  • Charlotte Elizabeth Brown was born on August 7, 2005. She was diagnosed with RDEB. The DNA results are not back to tell whether its HS or NON-HS, however, it's believed to be NON-HS. Her family lives in Birmingham Alabama. Charlotte has an older brother BEN (16 yrs old as of 2006) and a BIG GIRL sister ANNA (5 yrs old as of 2006). Her siblings are both EB free. Mommy and Daddy are Jerry and Debbie Brown. We love her with all of our hearts!! She is so special, not because of the disease but because she is our CHARLOTTE. 🙂 Love always, Daddy, Mommy, Sissy and Big Bro

  • Ashley was born on November 14, 1986. He has the Recessive Dystrophic form of EB, the Hallopeau Siemens subtype, and lives in Waipu, New Zealand, with his mom Kathy and dad, and his sister Nadya (with him in the picture) who was born August 25, 1991.

  • David was born on August 8, 1986. He has the Recessive Dystrophic form of EB and he lives in a small town called Holt in North Norfolk in the U.K. with Dad Richard, Sister Barbara-Anne born in 1983, EB free, 3 Cats Lucy, Tabby,and Sally 4 Hamsters Gizmo, Cobweb, Sweet and Cadbury, 1 Bunny Buzz and 3 Guinea pigs Woody, Sonic and Tails. David now attends a wonderful School with 140 other disabled children and loves every minute, he is hoping to become a lawyer, he started college September 2002 and we all wish him well.

  • Jessica Peres Pimentel was born on November 26, 1991. She has the Recessive Dystrophic form of EB and lives with her parents José Luiz and her Momma Maria Cecilia and the dog Pippi in São Paulo , Brazil.

  • Katherine Elizabeth Bartos was born June 13, 2000. Diagnosed with dystrophic form of EB (subtype unknown yet). She lives with her mom Draha, dad Milan, grandma Eva, four miniature daschunds Vendelin, Kryspin, Daria, and Max and a cat Vasut in Sugar Land, Texas.

  • Miranda Blattel was born December 14, 1998. She has the Recessive Dystrophic form of EB, and lives in Doolittle, Missouri, with her older sister Makayla (with her in the photo) and mom and Dad: Tammy and Matt.

  • Dona Reynolds was born January 13, 1988. She has the Recessive Dystrophic form of EB and lives in Florida with her mom Ann.

  • Lance Ballantine was born April 19, 1999. He has either a mild localized or generalized RDEB. Lance and his sister Abby reside with their father in North Bend, WA and attend the local grade school. Sadly, Lance's mom was killed in a car accident in February 2006.

  • Chastity Nicole McNiel was born February 21, 1984 to Carol & Rex McNiel. She has the Recessive Dystrophic form of EB, and lives in San Antonio, TX in an apartment with her boyfriend Jason. She was first born, so her family decided not to have more children. She is attending college to Major in Fine Arts & Graphic Design, hoping to someday be recognized for her artwork."

  • Rachel Nicole Barber was born on September 22, 1998. Her little brother Matthew was born August 28, 2000. They both have the Recessive Dystrophic form of EB and live in Delaware, Ohio, with their mom and dad, Molly and Greg.

  • Ian Evan Swarr was born May 28, 1998. He has the Recessive Dystrophic form of EB, and lives in Lancaster County, Pennsylvania, with his family.

  • Andrew Jordan Willett was born March 27, 1998. He has the Recessive Dystrophic form of EB, and lives in Churchville, Virginia. He lives with his mommy, Becky Willett and his brother Brian (EB free). His grandpa Roy and his aunt Sarah have EB, just on their hands and feet. Roy's father had the same kind.

  • Fallyn Raicheal Mcnamara was born on June 16th, 2002, she has the Recessive Dystrophic form of EB. The family lives in Irwin, Pennsylvania and it consists of dad Frank, Mom Cheryl, and older sisters Jennifer and Stephanie.

  • Hunter Dandurand was born June 29, 1997. He has the Recessive Dystrophic form of EB and lives in Crystal River, Florida with his mom Denise and dad.

  • Samuel Arcides Diaz was born on September 16th, 2005 and has the Recessive Dystrophic form of EB. He is Allison & Julio Diaz' first child and they live in Spokane, Washington.

  • Randall (Randy) Lowell Mayhew was born on May 22,1997 with Recessive Dystrophic EB, the Hallopeau Siemens subtype. He has one older brother D.J., and two younger sisters Donna and Dalayna, all are eb free. Randy's family lives in Columbus, Ohio.

  • Raymond Monroe was born 11-20-06 in San Antonio, TX. He has RDEB-HS and lives with both parents, Ralph & Alma Monroe and also with his older brother Ralphy (EB free) and baby brother Gabriel (also EB free) and another sibling on the way in April 2011.

  • Antonio William Torres was born November 26, 2000. He has the Recessive Dystrophic form of EB. He has a great personality and is always smiling not to mention his great big brown eyes that light up any room. He has a sister Tori 7/9/99 who is eb free and is the son of Liane Ottley-Torres and Antonio Torres, they live in Providence RI.

  • Sammy Diaz just turned 5 yrs. He has RDEB. He is a tough, spunky little guy who loves showing people his boxing moves.

  • Joey Entz was born on August 25, 1996. He has the Recessive Dystrophic EB, possibly the "Inversa" subtype. He lives in Chandler, Arizona, with his mom and Dad (Karen and Gene)

  • My son Zachery Ryan Myers has RDEB. His birthday is 8/29/06. He lives in PA. Zach has 2 sisters, Hannah and Madisyn, and 1 brother Brady. His siblings are EB free. Zachs parents names are Chrissy and Tim.

  • Ettore Buonocunto was born June 2, 1992. He has the Recessive Dystrophic form of EB, and lives in Grottaglie, a little village near Taranto, Italy, with his mom & dad: Giuseppina and Danilo. Giuseppina is a pediatrician and is/was the organizer of the Italian EB Conferences.

  • Jonathan was born May 11, 1999. He has the Recessive Dystrophic form of EB, and lives in New Britain, Connecticut. He has a big sister (EB free), Ashley, and his mom & dad are Brenda and Dominic.

  • Evey was born 9/9/2007. She has the Hallepeou Siemens subtype. Her only sibling is her standard poodle, Doolin. She lives in Minneapolis, MN with her family.

  • Weston Zucha was born in August 1994. He has the Recessive Dystrophic form of EB and lives in Texas, along with his mom and dad: Dana & Chris.

  • Lucy Margaret Elizabeth Lott was born November 18 , 1998. She has the Recessive Dystrophic form of EB, and lives in Comfort, Texas with big sister India Jane, big brother George, and with mommy Elizabeth.

  • Garrett Spaulding was born in January 1997. He has the Recessive Dystrophic form of EB, the Hallopeau Siemens subtype, and lives in Northern California with mom, dad and 4 older siblings.

  • Miranda Blattel was born December 14, 1998. She has the Recessive Dystrophic form of EB, and lives in Doolittle, Missouri, with her older sister Makayla (with her in the photo) and mom and Dad: Tammy and Matt.

  • Aa'Leigha Ashlon Parker was born with RDEB on 10/28/00 in Laurinburg, NC where she currently lives with her mommy Pam and younger sister Cidneigh.

  • Sarah Isabel Oliveira was born on September 27, 1998. She has the Recessive Dystrophic form of EB and lives in Elizabeth, NJ with her mother, Maria and her big brother David.

  • Catherine and Samantha Smith are identical twins, born November 8, 1997. They have the Recessive Dystrophic form of EB and live in Frankfort, Kentucky with mom, dad (Connie and Tony) and 5 older siblings.

  • Abdul Muqit was born on July 31st, 2004. He has the Recessive Dystrophic form of EB. He lives in Bahawalpur, Pakistan along with his mother Nosheen and father Zahid. He is a playful and talkative child and likes to hear music and sing songs.

  • Dennis Parlevliet was born in June 1993. He has the Recessive Dystrophic form of EB called Hallopeau-Siemens (webbing type). He lives in a small town called Noordwijkerhout in the Netherlands, Europe, along with mom and dad: Liesbeth and Johan and sister Suzanne.

  • Nicholas Alexander Zahorcak was born November 25, 1996. He has the Recessive Dystrophic form of EB, the Hallopeau Siemens subtype, and lives in California with his family.

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