Remembering Ryan

By Jen O’Neil

Ryan in his 6th grade picture

I got some good gossip the other day, and I got that excited feeling in the pit of my stomach and all I could thing of was…Oh man wait till Ryan hears this! Then it hit me, and the excited feeling in the pit of my stomach turned to lead. And I realized that this is what it’s like to lose your best friend. That is what Ryan was to me. Aside from being my boyfriend, he was the person I could talk to about anything and everything. We could read each other’s thoughts and sometimes finish each other’s sentences. We knew just what buttons to push on each other and yes; we could irritate each other like no one else could.

And man, could he make me laugh. There are really no words to describe the essence of Ryan, and what made him who he was. He was a combination of determination, wit, graciousness, courage, and creativity. He had the ability to touch every person he came into contact with.

His service reminded me of the movie “Mr. Holland’s Opus”. If you have never seen the movie, it follows a music teacher’s career over a span of 30 years. At the end he is forced into retirement and the school has a special ceremony for him. Hundreds of people showed up. Former students, friends, colleagues. As one speaker told him: Look around you. There is not a life in this room that you have not touched! I think Ryan would have been amazed at just how many people he affected.

I only knew Ryan for three years. I first met him just as his health began to decline. He could still walk when I met him. To define just how progressive and degenerative E.B can be, one need only to look at the picture collage in Ryan’s bedroom. Pictures of a chubby baby (chubby!) and a healthy looking 10 year old are mixed in with photographs of a frail looking soul sitting in his easy chair, covered in bandages from neck to toe. In many of the pictures the one feature that always stands out to me is his eyes. Ryan had beautiful, huge blue eyes that one could get lost in. The saying “The eyes are the windows to the soul” certainly rang true for him.

Photo: Ryan’s Formal pic ->

The first time I met him in person was back in 1997, on April Fools Day. He insisted that I play a joke on someone. “But I don’t know anyone here… who would I play a joke on?” We brainstormed and 30 minutes later I found myself phoning my mother back in Massachusetts to tell her that Ryan and I were getting married. We laughed like crazy as my mom stammered and stuttered threats over the phone before I told her it was a joke.

Aside from his family and friends, music was his great love. He loved to compose music, and when his hands no longer allowed him to play the piano, he became a collector of music. He owned over 500 CDs.

Ryan took piano lessons when he was young, but he never learned to read music very well. He had an ear for it and would play from memory. As he got older, his hands began to contract. As the fingers fused to the palm one by one, he compensated by playing with his knuckles. His piano teacher said that after Ryan’s lessons, the keys would always a little bloody. He would purposely schedule kids that he felt were becoming lazy about practicing right after Ryan, and he would wait until the next kid sat down to wipe the blood off the keys.

<- Photo: Ryan’s 8th Grade pic

Ryan taught so many people so many things. If nothing else, he taught me not to take the little things for granted. I find myself thanking God for things such as being able to walk up a flight of stairs or driving myself to the store. I also thank God everyday that I met Ryan. Of course I wish that we could have had more time together, but I feel blessed for the short time we did have. There was not a day that went by that Ryan didn’t tell me that he loved me, and he was so grateful for anything anybody did for him; be it giving him a gift or pouring him a glass of milk. Even though he was unable to do many things, especially these last two years, he loved life. He was able to find joy in simple things; things that most people including myself would probably not think twice about.

Last Halloween, as sick as he felt, he managed to do himself up from his collection of Halloween make-up kits, even though he knew his mom, dad and I would be the only ones there to admire his work. After laboring for 45 minutes the result was a realistic looking bullet hole in the center of his forehead, with fake blood dripping all over bandages that had just been changed hours before. Mom wasn’t too happy about that!

Just going to the mall with Ryan was a learning experience. Planning ahead of time, taking everything at a much slower pace. Learning to deal with rude stares and ignorant comments that people don’t think you can hear- and worse; the ones they know you CAN hear. Learning how to be aware of what is handicapped accessible and what is not. Learning how to maneuver his fart-cart through the narrow isles of K-B Toys was an experience in itself. Learning how to handle sales clerks who think that just because Ryan is physically handicapped, it must mean that he is mentally handicapped as well.

Photo: Ryan and Jen – Xmas 98 ->

On Veterans’ Day, Ryan’s feeding tube slipped out because the skin around it had broken down so much. He underwent surgery at Stanford Hospital to close the hole that his G tube had left and insert a J tube. The surgery went well, but things started to go downhill from there. He had a reaction to the nutritional supplement that they were feeding him through his J tube, which made him sick to his stomach. They flew him back here to Redding right before Thanksgiving, and he began having trouble breathing. Blisters had formed in his airway from being incubated during surgery. On November 27th, he stopped breathing and was resussitated and put on a ventilator. Since he was 22 and of legal age to decide for himself, he told us he wanted the tubes out. We made sure that he knew the consequences of his decision, and he still insisted that he wanted them out. 10 minutes later he stopped breathing; this time for good. He died just after midnight on November 28th.

It has been a little over a month now, and we are all trying to adjust to life without him. His room will remain the way it is. The only thing that was removed was his bed, and in its place stands a table with his picture on it, and two chairs. One of his easy chairs is still there, so that one may go in and watch his movies, listen to his favorite music, or play a video game, and just remember Ryan.

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.

Jenn’s Story

By Jennifer Kirk Deprizio

Jenn in the hospital right after she was born

Once upon a time. There was this baby girl that was born in 1979 in Wilmington Delaware. She had all of her fingers and toes, but there was something not right with her skin, because she had no skin on her left leg and also no skin on her stomach, and she had some blisters.
The Doctors did not know what this was until they had the Doctors come from A.I. Dupont Institute for Children in Wilmington, Delaware. It took the Doctors three days to diagnose her with Epidermolysis Bullosa, EB for short.

I bet you would love to know her name the little precious baby is Jennifer. This was not English when they told her Mother Joanne Deprizio and her father Richard and her Grandmother. After they diagnosed Jennifer with EB, she was in the hospital for 3 or 4 months in isolation to guard against infection, so they could teach Jennifers mother how to take care of the wounds that Jenn had and the blisters that would appear after a slight bump or scrap of the skin. Her skin is very fragile.
The nurses where really good about teaching Jennifers mother how to change the bandages and keep the wounds nice and clean.

A year had pasted and Jennifer was going to have a little sister. She was born in the same town and the same hospital that Jennifer was born in. The Doctors where afraid that Jodi would have EB as well, but she did not, that was good news for the Deprizio family.

One year later the girls mother Joanne was pregnant with her son Anthony, by a different father. So she had three kids to take care of. Nothing much was said about Anthonys father. Joanne was a very busy mother. She had 3 babies and to top it all off she had one with a very rare skin disorder and had to teach herself a lot about Epidermolysis Bullosa (EB) for short. jenn with snowman She had to constantly watch her and change her bandages everyday. Joanne had to grind her food because Jennifer could barely swallow food. Keep in mind that this was before DebRA was founded, so there was no one to help Joanne.

Photo: Jenn sleeping in her crib with her snowman.  

After Jennifer and Jodi where born their father Richard tried to help their mother Joanne, but she did not want their father anywhere near the girls. He wanted to help her because he loved his two baby girls. But Joanne kept their daddy away from them, so Jennifer and Jodi grew up without knowing their own father.

They thought that their mothers boyfriends was their father (she had more then one). Joanne let the girls think that. The Deprizio family was still living in Wilmington Delaware.

As the years went on their mother Joanne was getting abusive, mentally, physically and emotionally with Jodi, then Joanne stared to be abusive with Jennifer. Anthony was mommys little boy.

Jennifer's first walk

Jodi and Jennifers Grandmother Shirley wanted to get custody of the girls, because she new Joanne was abusing them. One day she called Child Protective Services, but they did not do a thing to the mother. They kept the girls there, and went back to tell Shirley that they cant do anything because there is no sign of abuse. But why would their Grandmother call them if she did not think that they would be okay in the home with their mother? The mother Joanne found out who called Childrens Protective services on her, and from then on she didn’tt want the girls Grandmother to find where they would be leaving. So, when their Grandmother found them, Joanne would move and this went on for quite awhile. A few years went on.
Jennifer was 8 years old and Jodi was 7 and their brother was 6. They new Anthony was their half brother, but never did they tell anyone that he was. They love him very much.

Well, as you know Jennifer was born with a very rare skin disorder and she had to grow up fast because of it. She was a very smart little 8 year old, smarter then a normal 8 year old would be. Anyway Jodi and Jennifer where very close and they both knew that.

One night Jodi told Jennifer that Gary (one of their mothers boyfriends) was sexually abusing her, this went on for years before she told me. Jennifer told her sister that they had to tell their mother that this was happening, may I remind you that their mother was physically abusing her already, well Jennifer and Jodi told their mother and she did not believe them at first. She got very angry with Jodi because he was doing that to her. Jodi did not know that this was wrong she was a little innocent girl at that time. Joanne was even getting worse with the physically abuse with Jodi. Nobody knew why she was like this just with Jodi and some with Jennifer. Jodi also told her teacher and her teacher called Child Protective Services who then investigated.

Jenn, Anthony, Joanne and Jody

A few weeks later Joanne called the Police and told them what has happened and they told her to bring Jodi to the Police station so they can talk with her about what Gary did to her. The hospital also examined her.Finally they charged him with sexually abusing Jodi. So, he went to jail and served 8 years of 20 that he was sentenced. He got out early because of good time. Can you believe they would release a sexual abuser!! Joanne said, well, he will not be getting out of jail so I have to go find me another man that will treat my kids like crap!! She did not say that but by her actions it sure did look like it. it’s like she even went to buy from uk meds for him to have a better desire!

Then their mother Joanne was single for a while. Then comes a long this guy Robbie, he was no better then the other guy that was in jail. Joanne and Robbie only knew each other for a week and they wanted to get married so they did, but behind everyones back. She did not even tell her own kids that they got married!! Jodi & Anthony and Jennifer where living in Anthony Florida, they had a nice 4 bedroom 2 bath trailer. Robbie did move in after they got married!! Jodis room and Jennifers room was right across from each other, and Jenn would keep her door open because she had a very bad feeling about this guy that her mother was with. Keep in mind Jodi and Jenn where very close!!

Jenn was 14 years old Jodi was 13 years old and Anthony was 12 years of age. So, one night something awoke Jenn and something was telling her to go in her sisters room and she did and there was that scum ball he was TRYING to sexually abuse Jenns sister Jodi, but Jenn did not let that happen because Jodi sister knew what she was going through with Joanne abusing her in every way she could so, her loving sister Jenn went in the room and was hitting on Robbie, even though she has a skin disorder she was a strong little girl. So, the sexual abuse, mental abuse, physically abuse went on for years to come, it was not getting any better!! The kids where happy and so was Joanne but when she meet Robbie she was a totally different person.

Photo: Jennifer’s third birthday

So, time went on and they lost that nice trailer they had all because Joanne would not pay the rent. Keep in mind that Robbie was still with Joanne, and living with them! I dont think Jennifer realized that she had a disability at this time, because so much was going on in her life at this point!! She would get an infection EVERY month and would be in the hospital for a week!! She was suffering from malnutrition because her mother was not caring for Jennifer the way Joanne should have been!

Jennifer was 42 lbs and was 4 feet; this was very bad. Jenn was nothing but skin and bone!! Jennifer almost died a few times because the infections got so bad. The hospital was like a second home for Jennifer. She liked the hospital better then her home, she was so happy when she would go in. Because she was away from the bad life she did not want!! She does not remember much about her past because she blocked it all out.

There is MUCH MORE that she has not told but I think it is best not to force her to tell!! Jennifer was VERY depressed because of the life Jodi (sister) and Anthony (brother) had. She would think of killing herself and what would be the best way to do it. She thought of this A LOT. She thought of doing this not to tell anyone about one of the infections she got and then just let it get so bad where NOTHING OR NO ONE could do for it to get better. But there was something that would stop her from doing this and that was she loved her brother and sister so much she had to be there for them. She loved her sister Jodi very much. Jennifer saw what Jodi had to go through and Jenn felt her sisters pain!! There is not much to tell about her brother!! Because he was a mamas boy! He didnt get in trouble EVERY day or got hit! Jodi and Anthony where very close too, and still are. Jennifer was not that close to her brother. But there was this one time that Jennifer does remember what her mother Joanne did to Anthony. He got her so mad where she went and ripped the phone cord out of the wall and stared to beat him with it!!

Photo: Jennifer on the swing

Even with me writing this it still hurts to even write or think about what did happen in Jennifer’s & Jodi’s and Anthony’s past! To despite the rough childhood and EB, Jennifer was a very happy girl. She taught a lot of people a lot of things and not to take things for granted!!

And to make a LONG story short, finally Jodi and Jennifer came to live with Grammy and their Daddy. Jennifer & Jodi’s brother couldn’t come because there was not enough room in the apartment that they had. He went to a boys ranch, I think that he needed to be there and instead of with Grammy & there Dad, Jodi and Jennifer. The kids have made it through their life.

Jennifer by her beanbag chairHi there! It’s me Jennifer! I just want to say a few words. I enjoy life as best that EB will allow. I have learned how do deal with EB and how to handle it with other people. There are rude people out there and there are very sweet and caring people. I have been told by many people mostly by my (GRAMMY) that I am very UNIQUE:) I am also special. I am going for my goal in life and that is go, have my own place and get my license etc…

Photo: Jennifer by her beanbag chair

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

About Eddie Paul

By Helen Kling

We would like everyone who is affected by Recessive Dystrophic Epidermolysis Bullosa to know our son Eddie Paul.  This is very much a success story, and hope that by sharing this, it will give others inspiration as he gave to all who knew him.

We already had a little girl who was almost three, when we were excited to find out that we were expecting again.  On September 20, 1957 Eddie was born but things did not go as planned.  He was born without the skin on his legs and feet and one finger.  He blistered easily to the touch, and in 1957 no one knew what was wrong with him.  Finally two months later the doctors told us they thought it was EB.  They also said he probably wouldn’t live very long.

We brought him home and I learned how to bandage him.  I learned very fast that I had to pick him up by supporting his bottom and chest rather than under his arms.  It was hard raising Eddie because I had no information and it was all trial and error.  I wish I had known more because I could have avoided so much suffering for him to go through.

He couldn’t suck from a bottle because it blistered his tongue.  So he learned to drink out of a cup when he was seven months old.   It was hard taking him anywhere because we had to explain to the public about his condition, even though no one understood.  But we took him anyway because we felt everyone should know about EB.

Our doctor had prescribed penicillin for both children just to ward off infection.  We let them play and do almost everything that other children did including playing in the sandbox and dirt.

Ed with his daughter Melissa

We knew some damage might occur but they would be better off emotionally.  When Eddie asked to ride a bicycle, I felt bad but I had to say no because that would be too dangerous.  I told him that as soon as he’s old enough I would teach him how to drive a car.

As Eddie grew older he learned what he was able to do and what he couldnt.  If he couldnt accomplish things normally he would find a way that he could.  Actually he was a good inventor.  He was active in school and enjoyed impersonating famous people.  He liked to make people laugh and made a lot of friends.  Our favorite impersonation he did was Elvis.

Ed went to Kent Sate University and received a bachelors degree in Telecommunications.  He had various jobs including NBC, cable TV and Case Western Reserve University.  His last job was with Rainbow Babies and Children’s Hospital of Cleveland .  He was the producer of in-house programs on the Rainbow Channel.

He met his wife Sandy and married in 1991.  They had a daughter, Melissa, in 1995.

Ed was diagnosed with metastasis squamous cell cancer in the summer of 2001 and found out it was terminal on 9/11.   He suffered and told me its quite painful and I told him that I understood, because what hurts him hurts me also.  He fought a courageous battle but died October 4, 2001 at the age of 44.

A plaque now hangs at the hospital where he worked with the motto, Do just once what others say you cant do, and you will never pay attention to their limitations again.  This is the way Ed lived his life and why he is a success story.

Ed with mom and dad

We were very proud to be his parents.  We will miss him but will always have him in our prayers and in our hearts.