| On The Wings Of Love is a page set up to allow other EB Children & Parents the chance to tell there story and show a picture or two. The stories will be left up for about a month or possibly more depending on the amount of requests that are in. Please try to limit the words to approximately 1000 or less. You must be at least 18 years of age to submit your story. If you would like your story told, please email me your story and pics to my_story@everlastingbutterfly.com. |
| EverlastingButterflies in the News!! Xantha Marshall |
ON THE WINGS OF LOVE
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| www.EverlastingButterfly.com Yahoo Web Hosting |
| BUTTERFLY STORIES |
Rylee & Lauren Rader
Lauren Rader
| How Tragedy Changed Our Lives Life had richly blessed us, but in the summer of 2003, we were challenged. We had a wonderful marriage, a bouncing toddler, and were expecting a new baby. Bryan had received a promotion that required the family to relocate from Massachusetts to Louisville, KY. We were delighted to come to Louisville, because it was Bryan’s hometown, and we were glad to be close to his family and friends. Four hours after the moving van pulled away from our new home, Leslie went into labor. The next morning, we welcomed our new daughter, Lauren, into our family. She was beautiful, but had some unusual wounds on her arms and fingers. Our obstetrician thought that maybe Lauren had sucking blisters, but she was not certain. Consequently, she immediately called in a pediatric dermatologist, Dr. Barbara Schrodt for a consultation. It was suggested that a biopsy of Lauren’s skin be taken for analysis; so the next day a tissue sample was taken. While we were waiting for the results, our daughter’s body was erupting in blisters. Her diaper area, underarms, hands, neck, and the back of her head had open wounds due to all the blistering. Our life was in turmoil. We frantically tried to find help from someone who knew how we should care for our fragile baby. Unfortunately, we soon learned that Lauren had a genetically caused condition called Epidermolysis Bullosa (EB). The Dr. Schrodt suggested a second biopsy that would be sent to a highly specialized lab that could identify the strain of EB that Lauren had. Epidermolysis Bullosa, known as EB, is the name of a group of genetic disorders causing blistering and shearing of the skin from even the gentlest friction, often from everyday activities. There are sixteen known strains that vary from mild to extremely severe that involve not only the skin but also the internal organs. One thing to describe EB’s rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. It is estimated that as many as 100,000 Americans, mostly kids, have some form of EB. Some describe their skin as delicate as butterfly wings. At this point, Dr. Schrodt also investigated the medical community and found that a nationally known, highly respected specialist for this condition, Dr. Jo-David Fine, had his office in Lexington. Lauren saw him for the first time when she was 18 days old. He gave us our first clear understanding of the condition and shared valuable information about how to care for her. He also gave us the name of an organization that not only supports research for a cure, but also provides families with much needed support and guidance. The next week, I called DebRA of America (www.debra.org) and spoke to their nurse educator, Madeline Weiner. We were finally able to talk to someone on a regular basis who knew exactly what we were experiencing and could answer our questions. She also explained the procedures for proper wound care, and helped us contact medical supplier’s that sold dressings that would protect and help heal Lauren’s body. In addition to phone calls, Madeline sent us a package containing products and clothes that cause the least friction on sensitive skin. There were also sewing patterns. Lauren’s clothing was all hand made because buttons, snaps, zippers, ribbing, and even brand name labels were abrasive and would injure her fragile skin. We felt so fortunate to have Madeline as our lifeline. Leslie is a certified athletic trainer; so the instruction and guidance that Madeline provided were easily understood. We felt fortunate for Leslie’s skills and relieved to know that we were caring for Lauren as well as could be. Lauren’s needs were daunting. Wrapping her arms, legs, and torso in special dressings protected her body from friction. Her daily care was comparable to that of a burn patient. Daily checks for new blisters and the maintenance of wounds was a full time job. Bathing and wrapping took at least two hours and a diaper change usually took about 30 minutes. Lifting and carrying her also required caution. We frequently carried her on a bed pillow to protect her from injury that could be caused by lifting and holding. Lauren saw the specialist in November for a third biopsy that would identify the subtype of the strain of EB that she had. Bryan and I also gave blood samples so that our DNA could be analyzed. At that time, the doctor strongly suggested that Lauren have a surgical procedure to insert a G-Tube into her abdominal wall because it would aid in boosting her caloric intake. She was not gaining weight according to schedule because all of the calories that she was able to take by mouth were being utilized to heal her wounds. She needed more nutrients to insure that she would grow, too. We were also told for the first time that she had a 50-50 chance to make it to her second birthday. Needless to say, that was devastating news, but we intended to move forward in a positive manner. Soon after that appointment, we had both our girls baptized. On December 12, Lauren was scheduled to have the G-Tube surgery. The procedure was very successful, and we can’t say enough about Kosair’s Children’s Hospital and Dr. Mary Fallat. Leslie stayed by Lauren’s side, and directed the nurses about how to properly handle her. We were allowed to bring our own soft bedding that would keep her as comfortable as possible. We were hopeful that the future would be brighter. Lauren started gaining weight, had seven little teeth, and could sit up for short periods of time. On March 18th, she ate her first bites of applesauce at lunch time and loved it. That evening, we noticed that something was wrong. She was having difficulty breathing. We grabbed all of her medical supplies and started for the hospital. To our dismay, there was a traffic jam on Blankenbaker, and the police were directing traffic. We told them that we were in crisis, and they called an ambulance. When the ambulance arrived, they couldn’t take Lauren because they were first responders and not equipped to handle her needs. A second ambulance with paramedics was then called. By the time they arrived, Lauren’s heart rate had slowed down. Leslie began chest compressions, but Lauren’s heart stopped in route to the hospital. The doctors in the ER tried everything possible, but she could not be revived. In memory of Lauren, Bryan and Leslie wanted to create a New Family Advocate Program. They believe it will be truly beneficial by bringing face-to-face support from an experienced person to those facing the daunting and overwhelming task of caring for such a fragile child. The mission is to provide moral support and to educate parents about medical supplies, state-funding information, wrapping techniques, and other information regarding appropriate baby supplies. Two month’s after Lauren passed away; Bryan and Leslie contacted DebRA to see if they would allow their outreach program to be part of DebRA’s organization. “We submitted our plan, and the Board of Directors voted to allow us to join them in support of families with children affected by EB.” DebRA’s financial accountant keeps The New Family Advocate Program fund raising proceeds and expenditures in a separate activity account. Working through DebRA has been a great benefit to us because we are able to easily coordinate our efforts with Madeline. New families are told of our willingness to come to them and provide any instruction or support that they need. Leslie has visited several children to date. She arrives ready to share her knowledge of proper handling and wound care and has a big basket of clothing, medical supplies, and helpful baby products. The response to her face-to-face support has been very positive. One young mother included her home health nurse and day care provider in the wound care training that Leslie provided. It is crucial to have the team of caregivers aware of all the needs of these special babies. In addition to visiting families, Leslie’s life has taken a direction that she never anticipated. She is now actively involved in public speaking, fund raising, and EB education. The president of a medical supply company in Pittsburgh invited her to address his staff about the needs of EB families from a parent’s perspective. Following her presentation, the company committed to donating start-up kits of medical supplies to include in the baskets that she takes on her home visits. She has also successfully solicited other companies about donating their products that are very EB friendly. In addition, the DebRA organization is providing opportunities for Leslie to visit and consult with the medical community who provide care for EB babies. Leslie considers herself a Mom-On-A-Mission. Thanks to the support of her husband and family, she is able to make a difference to new families who find themselves in a very frightening situation. In March, Leslie is hosting “Butterfly Benefit” Fashion show luncheon and silent auction to raise awareness about EB and to support the expenses of her program. It is March 23, 2005 at The Olmsted in Louisville, KY. The silent auction starts at 11:00 am with the Fashion show Luncheon following around 12:30. If you are interested in attending the event or would like make a donation, please call 502-299- 0862. Tickets are $20.00. |
Virtual Quilt
Antonio 4 years old RDEB
Antonio & Oxlee
Posted 3-31-05
Posted March 2005
| Only 12 days old… All my life I’ve known I was unique… I was born with EB. 1 in 50,000 they say. Then in 2002 I became apart of another group…the parent of an EB child. Samantha Renee was born 6 weeks early on August 29, 2002. She too had EB Simplex, and even though we were expecting it, we were not prepared for what it was really going to be like. But with the help of lots of others who have been where we were, we were able to pull it together and care for Samantha the best we could. Like many others w/ simplex, Samantha improved with age and by 18 months daily wrapping was no longer needed and she was beginning to act like a normal toddler! Shortly after mother’s day that year, we found out we were expecting another child. I was so happy! We had been trying for 6 months, and I know that really isn’t that long, but when I took just 2 weeks to get pregnant w/ Sami, 6 months seems like an eternity. In early July we found out the baby was a boy and Joe (my husband) was so excited!!! He had said prior to the ultra sound that if it was a girl, we’d have it give it back! This pregnancy was quite different than the one with Sami. I was very sick a lot of the time with the flu and some heart issues (which turned out to be normal during pregnancy) . At 28 weeks it was discovered I that I had placenta pervia (meaning the placenta was covering my cervix.) A check up four weeks later showed no change, which meant that I would have to have a c-section, something I did not want. (For many reasons). In addition, with Samantha being 6 weeks early, my OB didn’t want to risk me going into labor early, so the c-section was scheduled for 36-weeks (which for me was December 9, 2004). That is Joe’s birthday and our wedding anniversary! I wanted the baby to have his “own” and we tried to schedule the c-section for another day, but the 10th was a Friday and my OB didn’t work on Fridays. And the 8th was too early and the following Monday was too late, so the 9th it was! The baby however, had a mind of his own. One morning I woke with heavy bleeding. I called the doctor and they assumed my placenta had ruptured, so I went to the hospital. I got there and they scheduled me to have a semi-emergency c-section. I remember calling Joe at work and saying you have 45 minutes to get here if you want to see your son born! He arrived just in time and at 12:32pm, I gave birth to a 5 pound 13.3 oz baby boy (quite big for a 35 ½ weaker), we named him Garrett James- after Jesse James and Pat Garrett, two of Joe’s favorite cowboys. We did however have a pretty big surprise in the delivery room. You see when I was pregnant w/ Samantha, I just had a feeling she was going to have EB and I was right. With this one however, I had this feeling he wasn’t going to have EB and since I had been “right” with Samantha, I was hoping I’d be right this time. Unfortunately, I was not right and Garrett, like his big sister, had EB as well. I am not sure who was more shocked, me or my doctor? Garrett was missing skin on his feet, knees and hands. He appeared more severe at birth than Samantha did. After much pleading and begging with the doctors, they agreed to keep him out of the NICU. Samantha had been in the NICU and had some bad experiences in there, so we didn’t want repeat them with Garrett. Garrett started off doing well. Joe stayed w/ him most of the time since I was all drugged up w/ pain meds. He ate well, and slept through his first dressing change! We were both released on the 8th. He continued to do well at home. His skin was healing, and he was eating and sleep much better than his sister ever did! Then when he was about a week old, he started having breathing problems, which was causing eating problems. We took him to the doctor, who couldn’t tell if it was EB related or preemie related, so they put him back in the hospital as a precaution. His eating improved, though they never found a cause for his breathing issues, but never did any type of testing or put any of IV or NG tube to keep him hydrated at my request (more like demanding). After two days, they were happy with his improvement and sent him home. We thought things were getting better. However, less than 2 days later, he took a turn for the worst; he stopped eating and didn’t look “right”. We took his temp and it was 93.2!!! He was also semi-alert, so we called 9-1-1. The ambulance came and took him to the nearest hospital. Joe road with him in the ambulance. I followed in the car. When I arrived, they were working on Garrett and Joe was in the waiting room. A hospital Chaplin was with him. After I arrived, the Chaplin went to check on Garrett for us, and returned with news that will haunt my mind for the rest of my life, “they are doing CPR now.” We were TOTALLY shocked. We had no idea he was that sick. They got his heart going again, and we got to see him for a minute. Then a little while later, his heart stopped again and they let us go back in, thinking they weren’t going to be able to bring him back. Let me tell you to see someone doing CPR on your 12-day old child, is one of the worst things in the world to witness. We stood there, tears streaming down our faces, begging God not to take our son. Amazingly they were able to get his heart going again and got him stabilized. They then transported him to the children’s hospital in town. I rode with him to the hospital. Of course their was a traffic jam on the high way and the idiots wouldn’t move out of the way for use to get by even with the ambulance having its lights and horn on. We arrived at the hospital and they took him into the PICU. A little while later the doctor came out said he was septic and his heart stopped again. But Garrett was a fighter and they got it going again. We were able to go in and see him. He looked so sick. They had taken all his bandages off; his wounds were turning black; he has tubes EVERYWHERE; his kidneys were shutting down, his eyes were not responding to light; and he was on ventilator. He was VERY sick and his doctor only gave him a 25% of surviving. He said within two weeks we’d “know the end of this story.” We stayed with him for while. Then suddenly he opened his eyes and started to produce some urine, which mean is kidneys had started to work! We were so relieved. He was still in bad shape but this was a good sign. At that point he was stable and we decided to run home quick, see Sami and get something to eat. We were only gone a little over an hour when my cell phone rang. I looked at the caller id; it was the hospital. They wanted to know where we were and how soon we could get back. Garrett’s heart stopped again and they were having difficulty starting it. I remember sobbing to the doctor asking them to do whatever they had too to save my baby… he said they would try, but most likely “the end of the story will have been written by the time you arrive.” And it was… Garrett James Denslaw passed away at 8:12pm; at the time we were in the car about a block away from the hospital. I remember being in the car, looking at the clock and feeling that he was already gone. It was the strangest feeling. It wasn’t till about a week later than we learned his exact time of death. The hospital had said he coded at 7:45, which I thought they meant he died at that time. It made me wonder what exactly I had been feeling in the car? But when we had to sign the death certificate… time of death was listed as 8:12pm, and then I knew that what they say is true… a mother does know when her child has gone to heaven. A lot of me has changed since that day. I can no longer watch the TV show “ER”; the sounds of emergency sirens make my stomach tighten up in knots; I have more patience with Samantha now, and I have found who my friends really are. I was hoping some of those I called a friend, but hadn’t really been a friend in awhile would “be” a friend now… but I guess some things never change, even after something like this. 4 months have gone by and some days it seems like a dream and other days it seems like it all happened yesterday. I am still struggling to find a “reason” for all this and what God’s purpose is for us having to go through something like this. But I know we are not alone and we have met some wonderful people since that awful day. Posted 4-29-05 |
| Garrett James Denslaw written by Sara Denslaw |
CLICK ON THE LINK BELOW TO READ ABOUT BROGAN. BROGAN PASSED AWAY FROM THE SAME
FORM OF EB AS AVA (JEB-PA). BROGAN'S STORY WAS THE FIRST STORY WE READ OF AN INFANT
WITH JEB-PA, WHEN AVA WAS ABOUT 3 MONTHS OLD. THE SIMILARITIES BETWEEN THEIR
STORIES ARE SO OVERWHELMING.
BROGAN' S SITE WAS SET UP AS A TRIBUTE BY HER AUNT RACHELLE, WHO HAD HELPED US
DURING AVA'S JOURNEY.
FORM OF EB AS AVA (JEB-PA). BROGAN'S STORY WAS THE FIRST STORY WE READ OF AN INFANT
WITH JEB-PA, WHEN AVA WAS ABOUT 3 MONTHS OLD. THE SIMILARITIES BETWEEN THEIR
STORIES ARE SO OVERWHELMING.
BROGAN' S SITE WAS SET UP AS A TRIBUTE BY HER AUNT RACHELLE, WHO HAD HELPED US
DURING AVA'S JOURNEY.
BROGAN AYRE
| Jordan Kristopher Lewis 2/7/2005 to 3/19/2005 Son of Kris & Sheila (Frayle) Lewis To read about the Lewis Family, you can visit their site at http://jordan.krisandsheila.com |
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Celine Dion
"Fly"
"Fly"
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| CONGRATULATIONS TO THE DENSLAWS!!! SARA GAVE BRITH TO HER DAUGHTER GRACE CATHERINE ON 11/06/07, WHO IS EB FREE. |