Please click HERE before you leave to take the visitor survey and to submit any comments or suggestions regarding my site.
LEGAL EUTHENASIA OF SEVERELY DISABLED NEWBORNS
Please read the articles below concerning the legal euthenasia of severely disabled and suffering newborns in the Netherlands, including those born with EB. Below I have posted my opinion on the subject, feel free to visit my Message Forum to voice your views.
First I must say that I have never been a parent and can not even imagine how horribly difficult it is to see your child suffer. But I do know what it's like to be that child. I was born with one of the most severe forms of Epidermolysis Bullosa. I've always been so grateful to be alive but after reading the recent stories about infant euthanasia I am now also grateful that my chance at life was not taken from me. EB is a very painful, debilitating condition to live with that does in fact effect the whole family. And yes, many days are full of pain, challenges and may be unbearable or even hopeless. But there are also days of joy, love and laughter.
It is my CHOICE to keep fighting and surviving and all children should be given that right and choice. No one else should make that decision for them. I believe that even infants can choose to give up if it is just too much for them to handle. If they choose to keep fighting and surviving then all the parents can do is give them the best care they can and take each day at a time. If it is too much of an emotional or financial hardship for the parents shouldn't giving that baby up for adoption to a family who can offer the love, support and patience be an option way before euthanizing a child? Who knows what wonderful person that baby could become, what they could accomplish if only given the chance to survive. I have known many with EB who's lives were seemingly cut short by this disorder, but what they accomplished in life despite having EB has been an inspiration to countless people. They were still able to find joy in life and be thankful for what they had. This world is a better place because of people like Jonny Kennedy and others who made the best out of their life and chose to help others despite their own limitations.
If we allow infant euthanasia where would it end? Would all children born with severe forms of EB have their chance at life taken away? Doctors told my mom I would only live to the age of 2 and here I am 23. I feel so blessed to have a mom who took me home, gave me great care, took one day at a time and taught me that I can do and be whatever I dream.
A person can not judge another's suffering. Even parents of children and adults who are severely disabled still do not know what it's like to be in their child's shoes. Life is never easy. We are here to learn and grow from life's challenges. No one should have the right to take away another person's right to learn, grow and live.
"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
EB Events and Fundraisers:
April 14th, Patchogue, NY - A GRACEFUL EVENING - A dinner to bring the friends and family of Grace Peshkur together and raise funds for The Grace Peshkur Foundation. Learn More At:
April 19th, Atlanta, GA - BUTTERFLY WISHES FOR ELLIE - A Low Country Boil & Bluegrass Bash in honor of Ellie Tavani. Learn more at: BUTTERFLY WISHES FOR ELLIE April 20th, Pottstown, PA - BASKET BINGO FOR EB - A night of Bingo for Longaburger Baskets as prizes! Proceeds go towards DebRA. Learn more by contacting HOLLYE WAGNER April 21st, Lakewood, Ohio - THE BUTTERFLY EFFECT - An art show with a silent auction and raffles designed to raise money for DebRA. Learn more at: THE POP SHOP GALLERY & STUDIO
May 19th, Newport Beach, CA - AMAZING RACE FOR EB - Get ready for the second annual Noelle Hermes Foundation Amazing Race for EB!!! It will be held this year on Saturday, May 19, 2007 at the beautiful location of the Newport Dunes in Newport Beach, California. Patterned after the Award winning TV show, The Amazing Race. 5-person teams competing against other teams in 6 different events. Be prepared to use your brain, your brawn and anything else necessary to propel your team to victory and grab one of the great prizes for the top 5 teams. The event is designed so that EVERYBODY, regardless of age or physical fitness level, is able to participate. The day will go from 9 am to 5 pm, and besides all the wacky and crazy events, will include lunch, dinner, raffle and team awards as well as awards to the top 5 people who raise the most money.
Bring your family and friends to laugh, have fun and raise funds to help in our fight against EB. The money you raise will help alleviate the financial burden of EB to numerous EB families. You can make a difference!
Each person is responsible for raising $250 for the Noelle Hermes Foundation. Anyone 18 and under or college students are responsible for raising $150. We have forms and letters to help you raise the money. Last year we had several people who raised over $1000, the highest person raised $4700!
Visit the Noelle Hermes Foundation website for Registration Forms, Fundraising Letters, Sample Call Letter and Sponsor Form.
Coco Eyeshadow by Cargo - Sold at Sephora.com
About the eyeshadow: Five fun, playful
shadow shades allow for the creation of
soft, summer eyes. Each shadow is sheer,
blendable, and can be worn sheer or layered
for added intensity.Shades include:
Opalescent Petal Pink, Starlit Periwinkle,
Deep Amethyst, Shimmering Golden Kiwi,
and Midnight Black.
CARGO will donate 100% of the sales from this eyeshadow palette to go to the EBMRF!
Thank you Courteney Cox for creating this
eyeshadow and thank you Cargo and Sephora!
Click HERE to learn more and to purchase this
NuSkin Epoch Product Line
A donation of $.25 from each sale of three products
from the NuSkin Epoch line: Firewalker, IceDancer
and Glacial Marine Mud, will be donated to the EBMRF.
To purchase these products and make a difference for
Life Lessons for Busy Moms
Help co-authors Debby Britticks, Dorothy Breininger and
Lynn Benson support the EBMRF while you organize and
balance your world. Just choose "EB Foundation" from the
dropdown menu when ordering your copy and a percentage
of the sales of this book will go to the EBMRF! BUY NOW!
Ralph's Grocery Store
You can support the EBMRF with just the swipe of a card! If you or friends and family members are a Ralph's Club Card member, your card could earn hundreds of dollars for EBMRF Just log onto www.Ralphs.com, click on Community Contribution, Click on Participant, enroll your information, including the EBMRF charity number -81963 and you're done-now sit back and shop for EB!
The TPD Project
Chris, AKA The Magic PEZ Man started an organization called the TPD (Traveling PEZ Dispenser) Project which helps raise money for worthy causes including EB! They have chosen a special PEZ Dispenser called Color Crystal Florence Flutterfly PEZ® Dispenser and named it Dylan after a little boy from New York with EB and currently has over 300 Pez dispensers! Dylan the butterfly pez dispenser is sent all over the world along with a journal where people can write in it and take pictures to show where Dylan has been. The butterfly PEZ dispenser began it's travels on October 22nd, 2005 and has travelled to many exciting places and has been hosted by some very special people.
To sign up to be one of the participants or to donate money to the cause, please visit the Traveling Pez Dispenser Project website.100% of the money raised (minus paypal fees and an occasional shipping fee) through this project will be split evenly between the Epidermolysis Bullosa Medical Research Foundation (EBMRF) and The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA).
More People Raising Funds:
Please click HERE (coming soon) for more EB Events and Fundraisers!
EB on TV:
Medical Incredible - The Medical Incredible episode featuring a story about me and EB still airs occasionally on the Discovery Health channel. The title of the episode is Butterfly Skin, check your local listings for dates and times... MORE The Boy Whose Skin Fell Off - The Boy Whose Skin Fell Off is a documentary about 36 year old Jonny Kennedy who was born with Dystrophic Epidermolysis Bullosa. Originally airing in the U.K. it has now been... MORE UPDATE: Coming soon to DVD here in the U.S., please click HERE to put your name on the waiting list
Please click HERE (coming soon) for more shows that featured EB!
EB in the News:
Please click HERE for more EB news articles!
Please click HERE (coming soon) for more EB Blog links!
EB in Magazines:
The October 16 issue of People Magazine features Rachel Nasuti at the grand opening of the Ken Paves Salon in Beverly Hills! Many stars attended including Eva Longoria and Jessica Simpson. (Sorry, no pics or links yet)
Please click HERE (coming soon) for more EB in Magazines!
EB RSS Feeds:
Please click HERE (coming soon) for more EB Videos!
I wrote a poem that a wonderful singer
named Mary Lee Dazey offered to put
to music. Please visit her website!
Butterfly Child (Press play to hear song)
Written By: Cristina Perez
Sung By: Mary Lee Dazey
Jamie Gibson-Hartley was born with RDEB and an
amazingly beautiful voice! Her CD "Good Night Christmas"
is on sale now and ALL the proceeds go to the EBMRF.
Keep a lookout for her upcoming CD "Wondrous Discovery"!
Camilla's heartfelt lullaby “Better Place”, written after she
learned of the tragically premature passing of a child
stricken with Epidermolysis Bullosa, captured the thoughts
of a nation and comforted those who mourned. The song
served as the theme to the 2006 documentary on the child
and the disease and has been featured on Europeon TV. It
also catapulted Camilla to the top twenty list on MySpace
music, besting the likes of Usher and Ashlee Simpson. With
a full length album and international tour dates set for
2007, Camilla is poised for success on a grand scale.
Katora Jenee - age 14 with RDEB - "I am determined to
become a R&B/Gospel Singer. I have accepted my
condition and still will continue to pursue my hopes and
dreams and I know with Gods help I will succeed. To
myself I have a strong heart and a relentless passion and I
am glad that through this I have both my parents to stand
by me through whatever path I end up on. I hope that I will
be heard and give hope to all the other people in the world
living with the same condition or any other condition."
Please click HERE (coming soon) for more EB Music!
EB En Espanol:
International EB News:
Please click HERE for more EB Research!
Link to my Site:
You can use the banner below to link to my site. Please link it to www.ebpatient.com
Spread EB Awareness:
One way you can help spread EB awareness is by adopting an EB awareness fairy or blinkie like the ones shown below. Please click HERE for the adoption rules and to see all there is to choose from! Also don't forget to visit the EB Awareness Shop!