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 (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.


  • Kalie Danae Daniell was born April 25, 1992 and died on July 12, 1992 at 11 weeks of age. She had the Herlitz Junctional form of EB and died from several complications from it culminating in a cardiac arrest. Her mom's words: "She was a happy little girl despite her condition. She loved to pay attention to us when we talked and sang to her. She was a blessing to our lives. We will always be thankful for the eleven weeks that God allowed us to have with her." Her parents, Rick and Lori, have since adopted two boys, Seth and Brendon. Kalie will forever live in their hearts...

  • Kaitlin Michelle Patrick was born on June 25, 2000 in Terre Haute, Indiana. She died on August 18, 2000 from the Junctional Herlitz form of EB. She will be very missed by her Dad and Mom (Michael & Becky) and by her big sisters Kelsey, and Kourtney, and also by all the people who knew and loved her during her 7 weeks of her life.

  • Landon Lee Turner was born March 30, 1997 and died August 4, 1997 at 4 months of age. He had the "Herlitz" Junctional form of EB and died from complications from it. His parents Lee and Jolene and his sisters Alexandra and Madeline (Alex and Maddie) miss him an awful lot.

  • Caylin Marie Saver was born February 24, 2000 with the Junctional-Herlitz form of EB. She passed away on April 8, 2000 from complications due to sespis. She acquired an infection in her blood and skin. She passed away in the arms of her mommy and she was surrounded by her loving family.A note to Caylin: Mommy, Daddy and big brother Taylor miss you so much. Your memory will always live in our hearts and you are never far from our thoughts. We love you "Babycakes"...

  • Lisa van Gerwen she was born on Mai 1st 2000, with Herlitz Junctional EB and she passed away on July 17th 2000, 11 weeks old. We are so proud of her, in spite of the struggle against the EB she gave us so much love, the look in her eyes give us the strength to go on. We love her very much and miss her a lot. She will always be in our hearts.

  • Rebecca Anne Norris was born with recessive epidermolysis bullosa on 10-10-1979 and went to Heaven 9-12-09. "I was and still am very blessed to have her in my life." says her mom, Doreen Norris

  • Matthew Jake Archuleta was born June 9, 1998 and died November 11, 1998 at 5 months of age. He had the Herlitz Junctional form of EB and died from infection and respiratory failure. He is missed very much by family and friends and he is always in his mom's heart.

  • Coleby Brystal Myers was born on October 28, 1998 and died November 7, 1998 at 10 days old. She was diagnosed with Pyloric Atesia-Junctional EB. She died from complications (her kidneys shut down) from her second surgery to correct her stomach blockages, in her daddy's arms as he rocked her and sang to her. Her parents Tracy & Jayme love and miss her very much. She is and always will be their greatest blessing.

  • Carlos Famania Jr., born August 7,1999, lived to be almost 5 months. He passed away on New Years Day January 1st, 2000 @ Strong Memorial Hospital In Rochester, NY. He had the Herlitz Junctional form of EB, and he fought for a very long time from this disease. Carlos had 5 teeth and he smiled a lot especially at his mommy. Carlos shall be remembered forever by everyone who cared. Carlos b.k.a Strong Little Guy.....

  • Jaylin Elizabeth Pare was born on September 20, 2007 and passed away October 7th, 2007. She had Junctional Herlitz EB and died from complications in Safford, Virginia. Angel Dust by SlaveToTheMusic Let the angels sweep my child and hold her to the sky, Gently rock her to sleep with a sweet babies lullaby, Hold her in your arms as a halo floats above her head, When she falls asleep lay her upon daisy flower bed. Play with her on clouds as she giggles with such delight, Please be careful not to wake her as she is afraid of the night, Watch her eyes glisten with the color of beautiful blue, When she gets her wings make sure her hearts not askew. Feed her vanilla custard, As it is her most favorable treat, White her favorite color, wear slippers upon tiny feet, Protect her with your presence, make sure she is loved, Mittens upon pink fingers, through winter keep them gloved. Throughout cherub heaven will my precious daughter glide, Forever in my aching heart shall this angel always reside, Cloaked beyond magic, in a world where I can not hold, Let the memories of my daughter forever be told. WHAT I WOULD GIVE<3 by XxBaBBlinGXXBrOOkExx3 I think of that day; my vision blurs & my throat starts to close I'm trying to stay strong but my weakness seems to show What I would give to stroke your hair Grab ahold of your hand, to know that you'll always be there Looking back a year from today I lost a big part of my life; He took you away What I would give to gaze into your eyes So my reflection could show thoughts of you are always crossing my mind I miss you so & there is not a day that goes by Where I don't think of you & pretend to try To keep my composure; to not break down & cry What I would give to touch your lovely face To be surrounded by your love & your sweet embrace When I think of your soft smile & all the love you gave I know your place in my heart will never fade What I would give to have just one chance To play a never ending song so you & I could dance It's times like these I ask myself why He chose you to take to His home in the heavenly sky What I would give to get the opportunity to rewind to the past Where all of our memories could come alive & forever last Now your my guardian angel, always there by my side Although you are not here, your soul is coming along with me for the ride I just wish you could give me a sign, to let me know you're okay To give me one less thing to worry about each and everyday In my heart you will stay, along with the memories too & always remember that never in my life will I ever forget you

  • Nicholas Hunter Smejkal, was born and died on March 7, 2001. He had Junctional EB. And for lack of understanding, they say they really do not know why he died or especially died when he did. He past away two days before he was supposed to be born. My little angel Nicholas, I think of you always and you are always in my prayers. I will wish you well and I will one day be with you again.

  • Ryan Malby was born on August 8, 1993 and died September 2, 1993 at almost 1 month of age in his mommy's arms. He was diagnosed with Pyloric Atresia and Junctional EB. He died from complications.... This is what his mommy wants to say to him: I can't begin to put into words how much I miss you. I love you, wanted you and needed you more than words can ever say, you will always be my baby and I will always be your mommy, I love you. The Wind Will Gently Whisper Your Name Until We Can Be Together Again. We love you, Mommy (Tammy), Daddy and little brother Alan.

  • Brogan Ayre was born on March 28th, 2000. She was 7 weeks early weighing 4lb 3oz. She died on February 5th, 2001 at 10 months old from complications. She had Junctional EB with pyloric atresia. The pyloric atresia means stomach blockage. This form of EB is exeptionally rare. She put quite a fight for life in her short 10 months, and will be forever remembered and loved by all. Her mom Diane and dad Paul miss her more than words can say. The Following two poems were written for Brogan by her 11 year old cousin Amy. The first one was written when Brogan was 9 month old. The second one after her passing. ****~*** We prayed for a miracle and finally we were blessed But when she first arrived with us she was in quite a mess So we picked up all the pieces and but them back together And when we looked into her eyes we knew she'd live forever. We pray that God will find the love to make her better just maybe But one thing is for sure she'll always be our special baby. ****~*** Our baby is an angel now, She’s happy and carefree, Our baby is with God above, She’s where she wants to be. She wouldn’t want us to be sad, And so we shouldn’t weep, For in our hearts we’ll always know Our baby’s gone to sleep.

  • Nathaniel Richard Miller was born on April 30,2007 and died on June 20,2007 he was 7 weeks old. He had "Herlitz" Junctional form of EB. He died because his airway was blistered and could no longer breathe on his own. He also had two major infections the last five weeks of his life that he could not get rid of. He died in his mom's arms while she rocked him after the Dr. removed his breathing tube. He lived for three and a half hours. He is missed greatly everyday by his daddy and mommy also his brother and sister (Brandon & Kristen) who live in Ohio, USA and everyone who knew him. He touched everyone he met. We know he is in a better place without anymore pain and suffering along with perfect skin! Dear Mommy, I just wanted to let you know that I made it home.The journey was'nt an easy one, but it did'nt take too long. Everything is so pretty here, so white, so fresh and new. I wish that you could close your eyes and see it too. Please try not to be sad for me... Try to understand. God is taking care of me... I'm in the shelter of His hands. Here there is no sadness, no sorrow, and no pain. Here there is no crying, and I'll never hurt again. Here it is so peaceful when all the angels sing, I really have to go now- I've just got to try my wings!

  • Jennifer Marie John was born September 24, 1983 and died November 30, 1986 at 3 years of age. She also had the Recessive Junctional form of EB, and died of infection and heart failure among other things. Her mom Tania, and her brothers miss them terribly.

  • April Ann Stumpf was born on December 24, 1996 and died on May 21, 1997 at the age of 5 months from JEB Herlitz. Her life has given us a stronger meaning to our lives. We have learned to love more, care more, treasure life more, and not to sweat the small stuff. Thank you April for the wonderful gift your life has given us!

  • Mallory Hagler was born June 18, 1998 and died March 4, 1999 at 8.5 months old. She had the "Herlitz" or Lethal Junctional form of EB and died from severe anemia and heart failure. She is missed every day by her parents, Chris and Jill. In her short life here, she brought many lessons and goodness to them and their family. Mallory now has a younger sister, Jody who is EB Free.

  • Logan Henry Braun was born August 28th, 1998 and died November 27th, 1998 at 3 months of age. He had the "Herlitz" Junctional form of EB and died because his airway blistered and he simply could not take another breath of air. He died in his mommy's arms as she was rocking him. Her mom and dad, Jim and Sheryl Braun, and his brothers Colton, Jeron, Samuel , and sister Kendes miss him more than words can say. Two more EB free baby boys have joined the family since Logan's passing.

  • Garrett James Denslaw was born on December 6th, 2004 and died on December 18th, 2004 due to complications of two infections, MRSA and Pseudomonas. He had EB Simplex Dowling Meara. He is loved and missed dearly by his parents, Sara and Joe, and sisters, Samantha (EBS-DM) and Summer (EB free).

  • Jamie John was born December 7, 1984 and died July 11, 1998 at 13.5 years of age. She had the Recessive Junctional form of EB and died from these complications from it: respiratory arrest, pulmonary edema, severe protein energy malnutrition, sepsis and wound infection. She had no skin on 90% of her body when she passed away, and was in the hospital for 7 months.

  • Alex Martin Morris died October 27, 1996. He had the "Pyloric atresia" Herlitz variant Junctional form of EB and died at almost three months of age. Her mom Kristy misses him an awful lot.

  • Harrison "Beto" Wong was born on October 8th, 2002 and died on March 29th, 2004 DOD: 03-29-04 due to Respiratory Arrest secondary to complications due to EB Simplex Dowling Meara (severe). Our angel boy's short presence on Earth touched many lives and continues to impact our lives in positive and enlighted ways. We shall always remember our Harrison for the love and joy he brought into the lives of his parents and two older sisters, Lian and Cailin. We miss you dearly, Beto, and wait anxiously to be reunited in our Lord's Kingdom. Linda Wong

  • Allison Stang was born February 9, 1996 and died May 25, 1996 at 3.5 months of age. She had the "Herlitz" Junctional form of EB and died from gastro esophageal reflux with aspiration. Her mommy Fiona and her big sister Katie miss her very much!

  • Adam Jacob Stevenson was born June 24th, 1996 and died October 14th, 1996 at 14 weeks of age. He had the "Herlitz" Junctional form of EB and died of a blood infection from a surgery done to insert a gastronomy tube. He died in his mommy's arms. Her mom and dad, Mark and Heather Stevenson, miss him terribly. Adam has a brother and sister now, both healthy. Anna-Noel was born August 25, 1997, and Caleb James was born March 10th, 1999.

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