|Help Rachel Breathe Official Website|
On November 2, 2011 I wrote a blog post about Rachel Phillips. Please read it here.
We are trying to get Rachel and her story on the Ellen DeGeneres Show to raise awareness for Ehlers-Danlos Syndrome and at the same time get the donations for the surgery and aftercare that Rachel needs.
Here is where you can help! Go to this LINK: The Ellen Show
Scroll down to: “Be a Part of the Show” & “Nominate a Deserving Person in Need.”
Fill out the upper part of the form. When it asks for a picture, use the picture above that is used for this post.
When it asks for the web address… use this web address:
(it will link them to the helprachelbreathe web page)
Next it will ask you to TELL US YOUR STORY: You can copy and paste the text below…however keep the same title and remove the part (***my personal info***) and ENTER YOUR OWN INFORMATION.
PLEASE USE THIS EXACT TITLE BEFORE ENTERING YOUR OWN TWO SENTENCES. WE WANT ALL OF THEM TO HAVE THE SAME TITLE! There is only space for 1500 characters, so when you enter your personal information in between the *** make sure you don’t go over! Here is the text:
ELLEN-PLEASE HELP RACHEL BREATHE!!!
****My name is Jaclynn Boley and I have Classical Ehlers-Danlos Syndrome just like my friend Rachel Phillips. EDS is a debilitating disease that led to me being disabled and unable to work at the age of 33.*****
Rachel is 34 years old and a former dancer with the Royal Ballet of London. She also danced at the Kirov in Russia, the Nashville Ballet, Ballet West in Salt Lake City, Utah and other dance companies both here and abroad. Unfortunately, she developed a serious medical condition that has caused her to put her life on hold for the past several years. Her airways are failing from severe tracheobronchomalasia (TBM), a condition that causes trachea and bronchial airways to collapse. The underlying condition that brought about this problem in her case was Ehlers-Danlos Syndrome (EDS) – a genetic, connective tissue disorder that affects the collagen in the body. Dr. Paolo Macchiarini is using Rachel’s own stem cells to create new trachea to replace the one collapsing over 90% every time Rachel takes a breath. Because of regulations in the us the surgery must be done in Sweden and will be performed after the first of next year. Rachel and her husband Steven have exhausted all of their savings to keep her alive and need your help to get to Sweden to get this surgery. Without the surgery Rachel has been given less than a year to live.
Please help us save Rachel’s life and bring awareness to EDS and this surgery that could save so many other lives.
Then simply hit send and it’s on its way to the show’s producers….
You do not have to be from the U.S. to fill out and send this & * If you are under the age of 18, your parent/guardian must fill this out with his/her info and then tell your story on your behalf.
Thank you in advance for taking the time to fill this form out. It will only take a few minutes out of your day and could change the lives of two very deserving people.