Thank you for joining our efforts to Help Rachel Breathe!
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 regrow her trachea using her own stem cells.
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.
Rachel’s story was recently featured on this Vermont PBS episode of Emerging Science:
Watch Regenerating Our Future on PBS. See more from EMERGING SCIENCE.
Read more about Rachel’s story. Rachel was a world class ballet dancer who performed with the Royal Ballet in London, the Kirov in Russia, and other major companies in the US and abroad. Complications from a rare connective tissue disorder called Ehlers-Danlos Syndrome have degraded her body. She suffers numerous painful and debilitating symptoms from this disorder. The most immediate concern is over 90% collapse of her airways, which require her to regrow her trachea using her own stem cells. She will have to travel overseas for this life-saving therapy at her own expense as the procedure is not currently approved in the United States and is not covered by health insurance.
Learn more about Ehlers-Danlos Syndrome (EDS). This rare genetic disorder causes a variety of complications including some life threatening conditions. Until very recently little was known about this medical condition that can virtually paralyze its victims. Rachel’s case is the first known reported incident where EDS has caused significant pulmonary involvement to this degree, but many cases of EDS go undiagnosed.
See videos highlighting some of Rachel’s dance career. This section offers some actual footage of Rachel’s former dance abilities before EDS began to destroy her body. She has faced difficult challenges before in her life. The year she auditioned for the Royal Ballet they had over 10,000 applicants from outside the UK for just one spot which Rachel was awarded. This remarkable professional once broke her back when a partner missed a catch in a performance but Rachel finished the dance regardless of the pain. We thought you might enjoy some of her past performances.
Learn about Siena, a special service dog that can sense when Rachel’s oxygen levels fall too low. Siena is an adorable, 4-year-old, brown Labradoodle with some amazing abilities. Far more than simply a companion to Rachel, Siena is trained to offer mobility stability for Rachel to help her walk. But Siena’s most unique characteristic is the ability to smell when Rachel needs to check her oxygen supply. See Siena’s picture and read more about this unique story.
I to have EDS and had to have me esphogus repaired less then a year ago hen I ruptured it by a mear coughing spell. I pray that the laws are changed to allow for life saving medical procedures to be covered by insurance and preformed in order to save this girls life.
Dear Rachel
I am making this gift to you in honor and memory of my late Maestro, Stanley Herbertt. I studied under him for 11 years and should have kept at it much longer. Job requirements and other interests got in the way, but I gave up taking class when my limited ability halted my progress.
The man who taught me danced with the old Ballet Theater, (now ABT). He even performed under choreographers now in the pantheon, including Ashton and Tudor. The oldest photo on the wall of his studio was one of Makarova. And though he left this world penniless and forgotten, we both stand on his shoulders.
A. V. sends
Good Luck! I will keep you in my prayers.
Scooter
God Bless.
Hi Rachel,
I will share this post and ask my friends to pass it on. Hope it helps. I also have EDS.
I don’t have any money to send you. I presently don’t ahve an income but I’m with you and will say a prayer for you. Give that wonderful pup a kiss for me. God sent her to help you till you were well. Good luck honey.
michelle
Hi Rachel,
I will also share this with as many people as i can, I can not donate any money as I am disabled myself and live on a fixed income do to many illness’s, I will keep you im my daily thoughts and prayers as my heart goes out to you in your time of need…. May God Bless you and Keep you always!!!
Praying for you and posting the link to this page everywhere possible! Will be donating shortly as well. <3
A personal appeal from Rachel herself:
http://www.youtube.com/watch?v=waCOXBkVNbw&feature=player_embedded
If you want to help, please link to the above video, and this website, everywhere you can. Get this video and this story in front of as many eyes as you possibly can, especially medical professionals, media contacts, church officers and politicians. Thank you, and please act quickly, Rachel’s time is running out!
Rachel, you and your husband are in my thoughts and prayers from now on. I sent a little donation tonight that I wish could be much more, and I pray someone will help you substantially so you can get overseas and have the procedure. I have classic EDS, thought not life-threatening, it’s still been a lifelong challenge for me and the family members who have it. And I was only diagnosed a few years ago at age 56! Heaven bless you every day with the strength and determination to hang in there so you can be healed. Go for it dear lady! Sending you healing thoughts. Be brave!! You can do this!!!
Rachel, I also have EDS. I am praying for you, and that a cure is found for this. I am praying that you get to Europe, and get that transplant! You are a warrior! Keep up this fight! Your airway is affected, but after seeing that video, you have one of the loudest voices in this fight against EDS. You are a hero to me.
Much love, my friend.
Angie
Rachel,
Ain’t no mountain high enough. Keep on going. If there is anything I can do, please contact me. Take it moment to moment, keep a level head. You’ve endured so much already, so treat yourself peacefully. <3 My thoughts will be with you and I will be cheering you on from Baltimore.
Sama
Wish I could do more than wish for the best… But that much I do unreservedly.
I also have EDS Type 3 with a Chiari Malformation and a whole lot of stinky aches, pains and fatigues. I donated $25, it’s not much, but I know it all helps. Best of luck in your fight. I will send healing energy to you.
Much love and health – Stacey
I wish that I could help you. I have EDS too. I will do what I can to spread awareness and try to get you help. I am so sorry that your case is so bad. I hope that you get this transplant. I am routing for you. You are such a strong person. You can make it. I am thinking of your and supporting you.
You are in my prayers. Stay strong.
To dear Rachel,
My daughters and myself also have EDS and we go through hell every day but hearing your story makes our hell seem so minor. Our heart goes out to you and sending well wishes and prayers your way. Cant afford to donate myself as financing medical treatment here isnt always covered. I will share this page and hoping someone RICH comes through and can help out.
I want to wish you nothing but a full and quick recovery. You are an inspiration to me and so many others. Many of us want to offer all the encouragement possible. I will spread your story to every one I know.
God Bless You,
Suzy
Rachel,
My husband and I were moved by your story and donated a little something to help you. It is not much but as I also have EDS en health issues it is all we can afford at the moment.
We hope that you will be able to come to Europe soon to have your operation. Hang in there and don’t give up hope. We have shared your video and hopefully will many others do as well.
with loving healing thought
Ronny and Charissa from Belgium
I’m so sorry to hear about your problems. I have Classic EDS with vascular elements. I’m hoping that you cn get the care you need. No one should have to go through this becuase of a lack of funds.
sylvia
Hi Sylvia,
I saw your message as I also have Classical EDS with some vascular elements! I hope you are managing ok!
Praying for you. -hugs-
I too have eds. And I will share your story and will be praying for you and your family. I’m so sorry that you’re going through this….believing for a miracle.
Wow, Its so hard to believe that a life saving treatment would not be considered necessary! Wish you were well enough to get you to Canada! I would give you my health care card and ID so you could get the life saving treatment! I will pray for you Rachel. I understand the difficulties that come with having Ehlers Danlos syndrome. Sending much love your way!! <3
Hi Rachel,
So many of us with EDS find our financial resources drained by the fight for our lives. It took years for me to gather the funds to travel to Maryland for my own life-saving surgery this year (Chiari decompression and cervical-spine repairs). I pray that your fight will raise awareness and affect real change for us all.
Sending prayers for you, Rachel! My husband is currently waiting for a double lung transplant and has been waiting for 3 years so far. I don’t think people can really understand how stressful waiting for that call is! You never know when the surgery is going to happen. And trying to raise the funds is also very stressful. And all at a time when your health is so bad that stress is extremely bad for you. We are fortunate to have excellent health insurance to cover the transplant and many of the costs associated with it, but it will still costs us extra money so that we can stay nearby to be there for him. I understand that these things cost money, but a price should never be put on a person’s life and whether or not a person lives should not depend on how much money they have. I hope everything works out great for you and that you get that much needed surgery very soon so you can live a very productive and happy life!!! May you be blessed many times over!!! Stay strong and have faith! Miracles do happen all the time!
Wishing you all the best for this journey – I will continue to get the word out there to help you Rachel. Hopefully this journey opens up the doors for more people in the future, to recognise that this type of procedure can be incredibly valuable and life saving! We need to open up the doors in medical research to start letting patients benefit from it. I am right behind you!! xo
I wish you and your dear one a lot of strength and hopefully the future will look brighter soon!
Gert jan
Dear Rachel,
My heart is so heavy for your pain and suffering. I know that God is using your life mightily to bring Him glory. For you are Fearfully and Wonderfully made by HIM! I pray that He will work a miracle in your life, and heal your body. But if not, I pray that He will comfort you and be very near to you through this trial.
May the Lord Bless you and your husband with abundance of mercy, grace, and strength,
Rebecca Young
Matthew 5:16
I suffer from a dysautonomia as well and ever since I first saw your website I have been trying to think of what I can do. since I myself am unable to work, I can’t personally donate; however my mother recently started working for a company that donates 50% of their revenue to special causes and fundraisers. it is like a miracle has fallen into our lap to help others. we have been given permission to allow me to be involved and to hold a fundraiser for you and dysautonomia awareness. I’m so excited and can’t wait to get started. love and prayers. Whitney c.
Hi Rachel.
I also have TracheoBronchoMalacia. I spend a lot of my time at home hooked up to my CPAP. Just a few weeks ago a provider in my doctor’s office spoke to me about eventually having a tacheostomy as well. We have yet to identify what is causing my issues. The news you present here is really encouraging and I appreciate it. There is so very little in the way of information regarding TBM in adults. There is a small group of us on FaceBook who try to support and help educate each other. I’ve shared your blog website there already. We may be found at http://www.facebook.com/#!/groups/199216173447271/
Thanks again. God’s blessings and mercy!!
Mike McBride
Hi Rachel and family! I have what I believe to be HEDS and am waiting to find a doctor who cares enough to diagnose me properly, who will listen and not just tell me my pain and other issues are in my head. After reading your story, I truly consider myself to be very fortunate that I currently am not facing anything life threatening. You are such a beautiful dancer and your beauty shines from within as well. I have made a small donation and will share your website with others who will pray that you will be able to receive this surgery and ultimately receive complete healing. God bless the doctor who wants to donate his time to help you. If only everyone could all be this generous! Take care and stay strong!!! Praying for pain relief for you as well!!!
Jen from Estevan, Saskatchewan, Canada
Rachel:
As both a speech therapist trained to help patients in your position and a newly diagnosed EDS patient, my heart and prayers are with you daily. On my good days I am actively fundraising for this EDS and my church and husband are supporting my efforts. I’m spreading awareness and stories like yours so that people understand we need funding to change lives and heal special people like yourself. God be with you every day and peace and comfort to you during each moment. Hugs.