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!

Postural Orthostatic Tachycardia Syndrome, Hibernation, Blessings and Motherhood

I feel like I have been hibernating for the past few months. Feeling sick all the time and not being allowed to drive can kick a once very independent, didn't have to rely on anyone kind of girl right in the pants!  


Although I knew I hadn't been feeling well enough to write a post on my blog, but didn't realize it had been this long! That bear says it all! I have gotten kind of chubby like him too!!


I was finally diagnosed a few months ago with Hyperadrenergic POTS, (Postural Orthostatic Tachycardia Syndrome)  I have been dealing with the symptoms for over two years and it is the reason I haven't been able to work.  I have a great doctor at the University of Washington Medical Center Neurology Clinic who knows about this condition and what to do to help manage the symptoms. Most doctors sadly do not know what it is or how to treat the condition. So I feel truly blessed to have been able to find him and that despite his busy schedule and patient load, he was still able to see me. 


During this time I have reflected on the important things in my life and those are my family and dear friends. Thankfully I have been blessed with both! 


I had a great Mother's Day, spent it with two of my sons, my hubby, daughter-in-law, grand-babies and extended family.  Once your kids grow up you start going to their houses and man is that relaxing!! No cooking or cleanup, can you say perfection?!! So empty nesting isn't all that bad!!!


Among some of my great gifts is a beautiful album my daughter-in-law made for me from Grace and Adia, my grand-daughters.  Grace is three and a half and Adia is almost one and a half. Here are some of the pages from the album:

Album Cover

Grace, Adia, Pancho and I

Adia and I

Grace and Andrew having some fun!

Grace and Adia after their bath~

Grace putting on my makeup!!

Randy, Alyx, Grace and Adia

Grace having some fun in the park!

Easter Time!

I have second guessed my decisions in life, have felt twangs of guilt while raising my boys as a working and single mom, and despite all of my mistakes I have been blessed again with great sons. They all have become great men and I am so proud of them all.  My son gave me a gigantic card with a gift card, but what he wrote inside made me tear up. He thanked me for helping him become the independent person he is today, that I am a great Mom, role model and the best Mom ever!


Why can we be so hard on ourselves? We do the best we can with the situations that are given to us and usually our kids still think we are the best!

When God Created Mothers

by Erma Bombeck

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Mother’s Day column for May 12, 1974

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When the Good Lord was creating mothers, He was into his sixth day of “overtime” when an angel appeared and said, “You’re doing a lot of fiddling around on this one.”

And the Lord said, “Have you read the specs on this order?

• She has to be completely washable, but not plastic;
• Have 180 movable parts... all replaceable;
• Run on black coffee and leftovers;
• Have a lap that disappears when she stands up;
• A kiss that can cure anything from a broken leg to a disappointed love affair;
• And six pairs of hands.”

The angel shook her head slowly and said, “Six pairs of hands... no way.”

“It’s not the hands that are causing me problems,” said the Lord. “It’s the three pairs of eyes that mothers have to have.”

“That’s on the standard model?” asked the angel.

The Lord nodded. “One pair that sees through closed doors when she asks, ’What are you kids doing in there?’ when she already knows. Another here in the back of her head that sees what she shouldn’t but what she has to know, and of course the ones here in front that can look at a child when he goofs up and say, ’I understand and I love you’ without so much as uttering a word.”

“Lord,” said the angel, touching His sleeve gently, “Go to bed. Tomorrow...”

“I can’t,” said the Lord, “I’m so close to creating something so close to myself. Already I have one who heals herself when she is sick... can feed a family of six on one pound of hamburger... and can get a nine-year-old to stand under a shower.”

The angel circled the model of a mother very slowly. “It’s too soft,” she sighed.

“But she’s tough!” said the Lord excitedly. “You cannot imagine what this mother can do or endure.”

“Can it think?”

“Not only can it think, but it can reason and compromise,” said the Creator.

Finally, the angel bent over and ran her finger across the cheek. “There’s a leak,” she pronounced. “I told You You were trying to push too much into this model.”

“It’s not a leak,” said the Lord. “It’s a tear.”

“What’s it for?”

“It’s for joy, sadness, disappointment, pain, loneliness, and pride.”

“You are a genius,” said the angel.

The Lord looked somber. “I didn't put it there,” He said.