A Love Story~Rachel and Steven Phillips

Artwork by Michaela Oteri

I recently met Rachel and Steven Phillips on Facebook. Despite going through devastating health challenges, I was struck by their grace and love for each other.


This shines through every time they speak or write updates of Rachel's condition.


They desperately need to get Rachel to Europe for her life-saving surgery. Here is her story:

"First American Approved to Receive an Organ Grown From Their Own Stem Cells Will Take Place This Year "

Excerpts by Jaclynn Rose Boley

                                      

"Rachel Phillips was a ballet dancer who performed with the Royal Ballet in London, the Kirov in St. Petersburg, Russia and other major companies in the US and abroad. Her world came to an abrupt halt when she began to have complications from a rare connective tissue disorder. With her airways now over 90% collapsed, her only option is to re-grow her trachea using her own stem cells.

Rachel with Siena

This life-saving therapy is not yet approved to be performed in the United States, nor will it be covered by Rachel’s health insurance. 


In addition to the fight of their lives, Rachel and her husband Steven face mountains of medical and other related expenses. They must raise the funds necessary, not only for this life-saving treatment, but also to travel overseas and stay there through Rachel’s recovery, care for Rachel’s service dog Siena, and so on.

The clock is ticking. We need your help NOW in bringing awareness of Rachel’s life-threatening situation to a wider audience for the purpose of knocking down regulatory barriers standing in her way and to raise the funds necessary to pay for this necessary treatment."

You can watch a recent story about Rachel with her husband Steven Phillips covered by KHQA here: 

In Rachel's own words:





"Many efforts are in the works to help Rachel get to Europe; The website with the most information (including all efforts and past media coverage) is www.helprachelbreathe.com. If you wish to donate you can do so directly on their website. 

A Facebook Group and Facebook Page supporting Rachel have been created. 


You are welcome to request joining the group and "Like" the page too!  


There you will find posters that you are allowed to print up and post in your community, purchase the approved available artwork, post stories about Rachel on the different social media venues, sign the attached petition, visit their website to find out more about the Phillips family, which include Siena of course, and donate to their cause! 

Here is Wikipedia's definition of Ehlers-Danlos Syndrome.

I look forward to hearing from you.

Sincerely,

Excerpts of this post were written by Jaclynn Rose Boley with her permission. Thank you Jaclynn aka Carmen, my brain fog needed your help! Thank you Michaela Oteri for allowing me to use your beautiful artwork. Her artwork can be found Here!

@TheEllenShow - Please Help Rachel Breathe

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:
http://helprachelbreathe.com/wp-content/uploads/2011/10/rachel-on-a-good-day.jpg
(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.

With your help we can get Rachel's story to ELLEN and hopefully get Rachel and Steven Phillips the help they need.

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.

Rachel with her Service Dog, Siena!

I would like to thank Jaclynn Rose Boley for sending me this information that was included in this post from The Help Rachel Breathe Facebook Group. 

Related articles

• Help Rachel Breathe (mombloggerbuzz.com)
• What does Ehlers-Danlos Syndrome have to do with MS? (brassandivory.org)
• Hypermobility - A Condition of Flexibility... (showard76.wordpress.com)
• HelpRachelBreathe.org Official site for Rachel Phillips

Rise Above Your Limits and P.O.T.S

I was recently asked to be a guest on Becky Jane's blog, Rise Above Your Limits. Here I discuss how my condition, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome affects me on a daily basis.

If you visit her blog and leave a comment make sure you mention you are visiting from I Am All a Twitter About Life! Thank you for taking the time to read about this condition.