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Shamila Jayne Alolon

Shamila Jayne Alolon

Shamila Jayne “Baby Zhamie” Alolon is a pretty and happy little that you can’t help but be enamored by her sweet smile. With her cheery attitude and her sweet smile, you would wonder how she could …

Lisa Bagrova

Lisa Bagrova

Lisa is our little butterfly girl from a small village in Bashkortostan Russia. She was born with EB of the dystrophic recessive form, and has been fighting with it for 5 years ever since. She is …

Euan Khristoff Villanis

Euan Khristoff Villanis

JOIN ME IN MY SONS EB JOURNEY – GOD BLESS US ALL Euan was born with Epidermolysis Bullosa (Dystrophic) and needs help like others, not for a “normal” life, but for a quality life. Epidermolysis Bullosa …

Kiba Guzman-Cedeno

Kiba Guzman-Cedeno

Baby Kiba was born on January 16, 2015 with a rare disease called Epidermolysis Bullosa and Aplasia Cutis Congenita. This was a surprise to everyone including the doctors. The hospital staff was not equiped to deal …

Stevie Marie Hislop

Stevie Marie Hislop

My name is Stevie. I am 24 & I suffer from a rare genetic condition call Epidermolysis Bullosa (EB). My skin is as fragile as a butterfly’s wing. It blisters at the slightest of touches. I …

Lane Salter

Lane Salter

It all started about week after Lane was born. He started getting blisters around his mouth and as he got older, they progressed to different parts of his body. The doctors weren’t sure what it was. …

Jayden Elijah Georges

Jayden Elijah Georges

Jayden was born on 06/11/13, at 35 weeks. My pregnancy was uneventful until the day he was born. As they were wiping him, I noticed he was missing skin on his arm and legs. The NICU …

Paul Martinez

Paul Martinez

Hello, my name is Paul Martinez, I am 31 years of age and I reside in California. I was diagnosed with RDEB at birth. My life has been put on many time tables by many professionals …

Shea Fell

Shea Fell

  Shea Frederick Fell was born in the late hours of the night on December 9, 2013 to ecstatic new parents Bryn and Christy Fell! However, the joyous homecoming that was expected was going to need to …

Teagyn Grant

Teagyn Grant

Teagyn was born on Sept. 19th, 2013 at 4:04pm. We immediately knew something was wrong when the doctor didn’t place my baby on my chest after I had delivered. It was the scariest moment of my …

Raul Stan

Raul Stan

In 2009, Raul was born in rural Romania with severe RDEB, where he lived in isolation in hospitals and institutions until he was 20 months old. At that time he was approved to come to the …

Derra Sabo

Derra Sabo

Hi! My name is Derra Nicole and I was born with E.B. Life with EB is like a road trip. Sure, sometimes you run into a pot hole, get a flat tire or get lost once …

Samuel Diaz

Samuel Diaz

Samuel Diaz was born on September 16,2005, with a rare genetic skin disorder called Epidermolysis Bullosa (EB). EB causes the skin to be extremely fragile due to a missing protein in the skin. Those with EB …

Jackson Baldwin

Jackson Baldwin

Jackson Baldwin was born on August 20, 2011, by c-section and he came into this world at 8 lbs 4 oz. After Jackson’s birth, he continually developed more and more blisters on his body, so we …

John Hudson Dilgen

John Hudson Dilgen

John Hudson Dilgen is a wonderful boy who was born with a rare, genetic skin disease called Recessive Dystrophic Epidermolysis Bullosa (referred to as “EB”). Recessive Dystrophic Epidermolysis Bullosa (RDEB) is one of the more severe …

Liam Stearns

Liam Stearns

Little Liam Stearns was born on July 19th, 2012 with a serious skin condition called Epidermolysis Bullosa (EB). Liam’s family needs your help! He has an older brother and sister: Patrick who is 15 and Chloe …

Freddie Algate

Freddie Algate

Freddie Charles John Algate was born on the 19th of July 2013. We didn’t know he had Epidermolysis Bullosa, let alone heard of it. Freddie was born with no skin on his hands or feet. He …

Fallyn McNamara

Fallyn McNamara

Fallyn McNamara, an eleven-year-old sixth-grader from Hempfield, PA, loves playing with her sisters, attending Girl Scout events, and trouncing her dad on Nintendo Wii. No matter what the activity, though, she must be extremely careful- even …

Oxlee Rodriguez Jr.

Oxlee Rodriguez Jr.

Oxlee Rodriguez Jr. was born August 25, 2001 in North Carolina…a born Tar Heels fan. He was transferred shortly after birth to a hospital with an appropriate NICU and was diagnosed with RDEB. Ox has always …

Jonathon Connolly

Jonathon Connolly

Jonathon is a 14 year old young man who loves hockey, football, and anything to do with firefighters. He has a lot of dreams but knows that some will be impossible because of his EB. He …

Gabriel Eubanks

Gabriel Eubanks

After 39 weeks of a perfectly promising pregnancy and hours of labor, my baby was finally placed on my chest. He was covered in more white gooey mess than I had ever seen, but even through …

Raymond Monroe

Raymond Monroe

Raymond was born on 11/20/2006, and within seconds of birth, the doctors already knew he had EB. Raymond fought hard for his life the first three days he was alive. We were told to be prepared …

Hayden Sirr

Hayden Sirr

Hayden Sirr was born on 9-15-2012. At birth, he only had two visible scabs. The doctors and nurses had no idea what was wrong with him. Hayden was transferred to Loma Linda Childrens Hospital in Southern …

Charlie Knuth

Charlie Knuth

Charlie was born with Severe Recessive Dystrophic Epidermolysis Bullosa. After being abandoned at the hospital shortly after his birth, our family brought him home with us and he became Charlie Knuth. Charlie has undergone two stem …

Bailey Rae Lohr

Bailey Rae Lohr

Written by Bailey’s Mommy: My pregnancy went just fine, the normal pregnancy… The crazy cravings & nasty morning sickness. I couldn’t wait for my little girl to FINALLY BE HERE. Her due date was March 4th, …

Adriana Catlin

Adriana Catlin

Adriana Nicole Catlin was born on November 23, 2012, in Demopolis, AL. She was born with Junctional Epidermolysis Bullosa and Pyloric Atresia. Immediately after her cord was cut, Adriana was airlifted to Birmingham Children’s Hosptial where …

Eli Burkhart

Eli Burkhart

Baby Eli Burkhart was born on 11/27/12 with a significant amount of skin missing from his legs, feet, and hands. He was diagnosed with EB, a rare skin disease that causes the skin to blister and …

Cassie England

Cassie England

Cassie has a genetic disorder called Recessive Dystrophic Epidermolysis Bullosa. This disorder causes the skin not to have anchoring fibrils which hold the layers together. Any friction or pressure on her skin can leave large blisters, …

Brystal Murray

Brystal Murray

Brystal Murray was born on 11/10/11. She was missing skin on her left leg which led to her being diagnosed with Epidermolysis Bullosa. She is in pain all the time due to blisters and open wounds. …

Gunner King

Gunner King

Gunner was born on 12/14/11 with no skin on both feet, ankles, wrists, and hands. He had missing skin on his right cheek and his chest and scratches all over his face, lips, and all over …

Ben Wiley Jr.

Ben Wiley Jr.

Benjamin Joseph Wiley, Jr. was born on Oct 27th, 2011. Though it had been a normal, healthy pregnancy and delivery for Ben and his mom, it was immediately clear that something wasn’t right: baby Ben was …

Easton Friedel

Easton Friedel

Baby Easton was born August 23rd, 2012 at Auburn Memorial Hospital and immediately his parents knew something was wrong. He was missing skin on most of his limbs, covered in scary, deep red, open wounds. He …