A Mother's Personal True Story of Hope, Courage and Triumph ~ By Debby Lilly
"Imagine you
have waited nine
Visions of basketball games and rough-housing on the living room floor fade and blur. The good news is your baby is alive, the bad news is nobody is sure for how long. But he may live you beg. Yes, but life will be torturous, never-ending pain.
This is not some science fiction tale; it is reality for the parents of children born with Epidermolysis Bullosa called EB for short. And it is only the beginning. You can't hold and cuddle your little one because you will cause their skin to blister and slough off. Hours that should have been spent cooing and making silly faces are instead consumed by massive bandage changes that for many EB kids means from the neck down.
Instead of kissing little fingers, you use all your strength and patience trying to catch them so they can be wrapped individually to prevent webbing and contractures. You had hoped to always remember the sound of their laughter but you know that the day you die, you will still hear the screams and know that you were the one causing them. And once you get home the fun really begins. Insurance companies have never heard of it or consider the necessities of your new life unnecessary. "Why do you need 3 cases of gauze a month", they ask, "isn't that a bit much?" "Why does your child need pediasure, is he too good for regular formula? Mepital, that's expensive, won't Vaseline gauze that sticks to wounds do just as well?" Everything is a battle and no one seems to understand that it is a battle for the life of your child. "Well, maybe you can get some help from the government,right?" Just try to get Social Security to help pay for any of the mounting expenses that are starting to resemble the national debt. "You make too much money" and the recurring -" I have never heard of it" - constantly ring in your ears. You want to scream - Listen to me you jerk, nobody makes enough money to provide for an EB child. But somehow you make it through and it looks like there may be something in life for this young person you have fought so hard to get to this point – young adulthood. No more worries, he knows how to take care of himself and he has adjusted well to life with EB. He has found someone who is willing to look past his deformities and see the beauty of his soul. And the phone rings, just a regular check up but they found something, want to run some tests. The results are in - Squamous Cell Carcinoma - skin cancer you think - no big deal after all you have been through. Thirty days later you are planning the funeral and trying to make sense of it all. You curse doctors and nurses and most of all God. The only thing that keeps you going is that no matter how bad your pain, you know that sweet child is finally out of pain.
Imagine this is your life. It could be, you know. Seventy percent of EB children are born to parents with no history of EB. Imagine the next time your wife or daughter or daughter-in-law or even granddaughter says those mystical words - "I'm going to have a baby" - and nine months later you don't have to worry about how to spell Epidermolysis Bullosa because it was tattooed on your heart the moment you saw the new little munchkin you waited so long for.
There are ways you can help. Help fund research for a cure. We are very close and it is our children's only hope. Contact the EB Medical Research Fund at Stanford University 130 Sandringham Road, Piedmont, CA 94611(http://www.ebkids.org) Or DEBRA of America Inc. 5 W. 36th St., Suite
404 For more details on how to help find a cure; or just to make a donation.
Tell the world that October 25-31 2003 is National Epidermolysis Bullosa Awareness Week and that every dime helps. With your help, there is hope that someday EB will be a thing of the past... a science fiction tale. With your help, there can be a day with no pain or blisters or begging for help for our children. IMAGINE THAT! Thank you for listening, now please do something!" |
A collaborative effort between Marine Corps Base Camp Lejeune and New Hanover Health Network to assist disabled children of Marines is being touted as a model for other Marine Corps bases as well as other branches of the military. Camp Special Time offers children with special needs a weekend of activities while their parents, who are stationed at Camp Lejeune , enjoy a short time of respite. For further information on Camp Special Time, the
Exceptional Family Member Program or to volunteer, contact David Reintjes at
910-451-9372. Marine Corps News: Read Full Story Every year, the American Academy of Dermatology sponsors Camp Discovery -- a summer camp in Crosslake, MN, for young people with serious skin conditions. Camp Horizon - website unavailable Danville, PA 17822-1406 Camp Horizon is located at Camp Victory in Millville PA. This is a residential camp for children 8-13 who have severe skin diseases such as psoriasis, ichthyosis, epidermolysis bullosa, atopic dermatitis, ectodermal dysplasia, and extensive alopecia areata. Camp offers outdoor and indoor activities such as games, fishing, water sports and arts and crafts. Activities are structured to accommodate children who are sun or heat sensitive. All children with severe skin disease are invited to attend camp regardless of where they live or their financial means. NO FEE is charged for camp. Transportation can be provided. Camp Wonder is a wonderful weeklong summer camp for kids, teens and adults with skin disorders. Camp Wonder is located in Livermore, California. Camp Knutson, located on a peninsula separating Whitefish and Big Trout Lakes near Crosslake, Minnesota, began in 1953 when Congressman Harold Knutson gifted his summer property to serve as a retreat for children with disabilities. Camp Knutson, a program of Lutheran Social Service, focuses on families with children who have special health needs or disabilities. Different groups served include children with hearing impairment, autism, developmental disabilities, chronic illness, and debilitating skin diseases. About 700 campers are served each summer.
Courtney Cox
Arquette has gone on a
personal crusade to raise awareness for this issue when a close friend
gave birth to a beautiful baby boy 2 years ago. He was diagnosed with the
same type as Oxlee Jr. It is one of the most severe forms out there & one of
the reasons we need to find a cure and up-to-date treatments to provide
the quality of life for these kids that they may otherwise suffer from for
years to come. Brandon's aunt (the boy who touched Courtney Cox's life and
started this awareness) is a major advocate for her brother & sister in
law to get the word out on EB. They run a not-for-profit foundation called,
EB Medical Research Foundation or EBMRF. Website: (www.ebmrf.org).
The Epidermolysis Bullosa (EB) Center at Cincinnati Children's Hospital Medical Center offers links to local, national and international news coverage on Epidermolysis Bullosa (EB), a rare genetic skin disease. Local News / Patient Stories
International News
Please Help Keep Jonny's Dream Alive
There Are Many Ways You Can Help! The DebRA organization (Dystrophic Epidermolysis
Bullosa Research Association) of America is a voluntary, non-profit
organization dedicated to finding a cure for Epidermolysis Bullosa. You
can donate money directly by visiting their site. The EBMRF is a volunteer nonprofit foundation dedicated to the support of medical research of Epidermolysis Bullosa (EB), its causes, the development of successful treatments, and ultimately, its cure. The EBMRF is unique in that we pay no salaries. All work, including executive, legal, accounting, development and administrative, is done on a volunteer basis. Because we have other sources to cover our minimal operating costs, 100% of all funds received through the Internet will be directed to the research program. Please donate to the EBMRF by visiting their site and
help us find a cure for Epidermolysis Bullosa! A wonderful EB mom named Lorraine Cameron organizes a special event every two years around Valentine's Day for all EB patients and their family and friends to attend Walt Disney World for a fun filled weekend get-together. If you would like to donate money, air miles, specific items or your time to help out it would be much appreciated. The event is called Have a Heart for EB and you can learn more by going to the website. Annie Perkins, a Christian singer has written a song called, "Little Lamb" in memory of her third cousin Nathan Rademaker, who sadly passed away from Herlitz-Junctional EB at only one year old. 50% of proceeds go to DebRA and the other 50% toward future fundraising. The "Little Lamb" CD link will take you to Silvia's EB Info World for more info.
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months and the magic day has arrived. Imagine you go to the hospital to
be surrounded by smiling faces telling you how wonderful this is going to be and you wait
and wait and finally the magic MOMENT has arrived. You push and scream and yell the
appropriate curse words and think it is never going to end and then, there he is, the
little boy you have prayed for and dreamed of for so long. Now imagine that the smiling
stops and the calm, reassuring look on your doctor's face is replaced by one of confusion
and concern. This is supposed to be the happiest day of your life and suddenly in a blink
that is all over. Joy is replaced by fear and your dreams with nightmares at the sound of
the words - "There is something wrong here". Hours later, you are told that your
child has been born with genetic skin condition called
