~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 mitten like 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.
Jennifer DePrizio
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Jennifer DePrizio was born on December 14th, 1979 in Wilmington, Delaware with the Recessive Dystrophic form of EB called Hallopeau-Siemens. She lived with her mom until August 1997, and then went to live with her grandma Shirley and her father Richard. She passed away on May 18th, 2005 due to kidney problems. She had been on dialysis. Jennifer graduated from Eau Gallie High School and attended B. C. C., where she was a member of the International Honor Society. She was a member of Holy Name of Jesus Catholic Church and was a spokesperson for Dystrophic Epidermolysis Bullosa Research Association (DebRA). She is survived by her beloved grandmother and caregiver, Shirley May Jones; father, Richard Paul Kirk; sister, Jodi Deprizio and brother, Anthony Deprizio. |
After Glow
I'd like the memory
of me to be a happy one.
I'd like to leave an after glow of smiles when day is done.
I'd like to leave an echo whispering softly down the ways,
Of happy times and laughing times and bright and sunny days.
I'd like the tears of those who grieve, to dry before the sun.
Oh happy memories that I leave behind when day is done.
A Note from Shirley:
On May 18, 2005 Jennifer Kirk Deprizio died. She died from IGa Nephophthy and kidney failure. Jenn had Recessive Dystrophic Epidemoloysis Bullosa, subtype, Hallopeau Seimens. She also had IGA Nephopothy, but it was in remission, and she wasn't a kidney transplant candidate because of her immune system. They, DebRa and EBMRF, are working for a cure - on the east coast and west coast (Stanford University) - but I was told by a doctor "not in my time".Jennifer would have lived if it hadn't been for EB (Epidermoloysis Bullosa) and IGA Nephrophaty- would have lived a long time - but she died at 25 years old - just in the prime of her life. I am glad she passed away, as she suffered all of life, and she was just going into the prime of her life. It would mean amputation of her limbs, and she wouldn't have that. She wouldn't have gotten married, and had children, which is what she wanted. She wanted to give me a great grandchild.Anthony had a child - her name is Raven Jade Jennifer Deprizio. I should say Nadimah, my daughter-in-law had her :-) She is precious and she would have been one year old on September 11, 2007. I am very proud.I spent hours taking care of Jen, until I got a nurse coming in every day, except week-ends. I took care of her on week-ends. Sometime she took Saturdays off from her bath and bandages, but I would bath and bandage her Sunday. It took me and the nurse three hours to bath and bandage her.I will never forget her, and sometimes I feel more selfish then other times, because I feel confused - that I would have liked Jenn to keep on living. I hope they find a cure soon. You know there is no cure...love you Joe. grammy Shirley
Email her Grandma Shirley
Ryan Grant McClennen
Ryan Grant McClennen was born March 3, 1977 and died November 28, 1999 at 22 years of age. He had the Recessive Dystrophic form of EB and died from many complications from the disorder, including blisters in the airway and infections. His parents and his girlfriend Jen miss him terribly.
Jennifer Johnson
Jennifer Johnson was born August 29th, 1982 and died in December 1998 at 16 years of age. She had the Recessive Dystrophic form of EB and died from congestive heart failure. The EB had caused malnutrition, and it weakened her heart. The heart not pumping as it should caused fluids to build up in the lungs, liver and spleen. Her mom and dad, Donald and Sharon, and her sisters Elizabeth and Sarah miss her terribly.
Cynthia Dawn Rushing
Cynthia Dawn Rushing (Cyndi) was born June 19,1979 and was called home to be with the Lord Jesus July 14, 1999. She passed away due to aspirations caused from complications from Recessive Dystrophic Epidermolysis Bullosa. Cyndi is now free from the pain which she lived with for 20 years, She is in God's home now where she will be pain free for eternity. Cyndi was a big fan of country music. We were able to take her to Fan Fair and some fan club parties in Nashville, TN the last couple of years on her birthday. She loved to go to a concert if close by home. Cyndi had a fairly normal life, as normal as E.B. would allow. She graduated from Pascagoula High School in Pascagoula, MS in 1998. Her Grandpa always told her he hoped he was alive to see her walk across to receive her diploma. Her sister, Sherri (E.B. free) helped her out of wheelchair at graduation and Cyndi Walked across to receive diploma and walked back to where her sister was waiting with wheelchair. The entire senior graduating class stood and applauded as well as everyone in attendance in a standing ovation. She surprised everybody, including her Grandparents. Cyndi wasn't able to walk for a few weeks afterward because of blisters that resulted. Her mom, dad, and sister ( Debbie, Randy and Sherri ) miss her very, very much but they know they will be together again in Heaven.
Peace be thine
God looked around
his garden and he found an empty place,
He then looked down upon this earth, and saw your tired face.
He put His arms around you and lifted you to rest.
God’s garden must be beautiful. He always takes the best.
He knew that you were suffering, He knew you were in pain.
He knew that you would never get well on earth again.
He saw the road was getting rough And the hills were hard to climb.
So he closed your weary eyelids and whispered, ”Peace be thine.”
It broke our hearts to lose you, but you didn’t go alone.
For part of us went with you the day God called you home.
Brittany Hammonds
Brittany Hammonds was
born on June 22, 1995. She had the Recessive Dystrophic form of EB and
lived
in Salem, Oregon, with her sister Hailey, grandma Pam and Grandpa Ludie.
She died on July 24th, 2005 of complications from an enlarged Heart
(Heart Attack).
We will always love her...
God saw you getting
tired,
And a cure was not to be,
So He put his arms around you,
And whispered...
"Come With Me"
With tearful eyes
We watched you suffer,
And saw you fall away.
Although we could not bear to
lose you,
We could not ask you to stay.
A golden heart stopped beating,
Hard working hands laid to rest;
God broke our hearts to prove to us,
That He only takes the best..
Kelly Jean Drewrey
Kelly Jean Drewrey was born in Los Gatos, California on December 21, 1972, and entered into eternal life in Palo Alto, California on August 13, 2000. She is resting peacefully at Oak Hill Memorial Park. She was very active in helping in awareness and fundraisers for both the EBMRF and DebRA She fought cancer for several years before succumbing to it. She was a great spirit and an enormous inspiration to all... she will never be forgotten.
The Dark Petaled Rose
I contemplate your
petals as I count them with such care
Why are they stained so dark, their deepness very rare
Can you share your mysteries, what do your symbols mean
There must be more to this life than what my eyes have seen
I sense you hold a greater truth something powerful and sublime
To help me clear the uncertainty how to live this precious time
But the harder I search for answers and try to solve your code
I see the minutes tick away as both of us grow old.
Ah, is that what you're trying to show me in a way I couldn't forget
To yield from all the questions to take the time to sit
Let go of things that are unknown-the when, the why, the how
Appreciate what's set before me, Embrace the moment Now
Tricia Ann Howe
Tricia Ann Howe was born April 22, 1974 passed away Monday, July 15 2002 at her home. The daughter of Robert and Sherry (Griffin) Howe. She graduated from high school with honors at Oak Forest, Ill., in 1992. She moved to Winter in 1994 with her family, where they operated Howe’s Northern Hideaway. Tricia was very knowledgeable with computers and she used that knowledge to help others that shared her affliction and to create a web site for her parents’ resort. She enjoyed drawing, music and playing with her pet dogs. Tricia is survived by her parents, Bob and Sherry; brother, Brett (Yolanda) Howe, Chicago, Ill.; sister, Laura Howe, Winter; niece, Amanda and maternal grandmother, Pauline Griffin. She was preceded in death by her paternal grandparents, Bob and Jean Howe, and her maternal grandfather, Jack Griffin.
Alexander Zahorcak
Alexander Luciano Zahorcak was born and died March 1, 1995. He had the Recessive Dystrophic form of EB and died in the womb a few days before his actual delivery, on February 25, 1995. At the time of his death the fact that he had EB was not known, but after his little brother was born with it, it explained all his peeling skin which was a lot worse and different than other stillborn babies, and very much compliant with an EB patient. We will never know what exactly caused his demise, at the time of his death a cord accident was guessed, but we later found out that many EB babies do die during pregnancy, but we never told of an actual reason why. Alex... you are very much loved and will never be forgotten.
Click Here to visit his memorial page to visit his memorial page
Emmylou Carouthers
Emmylou Caroutherswas
born in Steuvenhille, Ohio on October 11, 1980, and went to be with
the Lord Jesus Christ on April 21st 2007. Emmylou was in the arms of her
mom Tammy Garonald Cariouthers & stepfather David Aronold & fiancee'
Ronald Lee LaMacchia. All three were holding her at the same
time for her last 5 hours. She went in Peace fast and was not alone.
She is and will be missed, but she is in no pain, no
more bandages, lying next to her dad, Thoms Carouthers in Toronto, Ohio.
If your child died from complications of EB and you would like his or her photo on this page, please contact 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: 05/10/2006
