Keeping Rebekah Alive

My daughter is named Rebekah. She is very strong, loving, bubbly, compassionate and has gone through more in her short life than most people will in a life time. I am completely amazed and blown away by everything she has survived all the years and the incredible person she has become through it all. 

Rebekah was diagnosed at the age of 12 with a progressive, degenerative, lung condition that causes artery constriction and progressive suffocation.  The world around me just went on without me and my life became keeping my child alive.  

It has been a very, very long journey but we have had many unique and personal miracles-- gifts from HASHEM.  These usually seem to happen around Hanukkah so its a time to look forward to. 

Many people ask the question, "why me?"  but I have come to understand that HASHEM specifically picked me out to be Rebekah's mother.  The medical world is very hard and complicated and if you don't have someone to take care of you, advocate for you,  bulldog through for you, argue with insurance and medical companies for you, raise funds for you-- you just wont make it.  So when I imagine Rebekah alone in the world, as so many sick children are,  I am happy that HASHEM picked me out for the job.  Despite the fact that it is hard, it is better than the alternative. 

Many people tell me that  seeing the suffering of innocent children really shakes their faith in HASHEM. My belief is that HASHEM stacks a lot of bricks on one person's shoulders because He knows they can carry it and He doesn't put it on the next person's shoulders because they would collapse under it.  For us this is empowering. 

We believe in endurance.  Getting knocked down and getting up again and again and again..... and again,   Controlling your thoughts and not letting them go to dark places,  strategizing and restrategizing hope and faith in HASHEM again and again,  and just holding on. We have been holding on for a long time.

There are many scientist who have dedicated their entire lives to finding a cure and who are actively working on finding a cure right now.  There are many drugs that are in phase 1 testing right now. 

I am just trying to keep my daughter alive long enough to see these things come about. I know that in the end there is  geulah.  I can almost see it and almost feel it. 




References:

Rebekah in the Miami Herald:

https://www.miamiherald.com/living/wish-book/article221898290.html 

Rebekah in the Star Advisor (Honolulu Newspaper): 

http://www.staradvertiser.com/2018/09/28/hawaii-news/lee-cataluna/lee-cataluna-simple-gift-involves-many-hands 



A visual of my daughter's illness. 
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REBEKAH'S HEROES 

Bikur Cholim-- Famous Israeli singer Gad Elbaz visits Rebekah.  What a tzaddik! 
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A Bikur Cholim -- Musician Jeremy Gaisin and  Comedian Moshe Kopstick.  They did such a wonderful, wonderful mitzvah for Rebekah that will always be treasured. 
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With Kyra Gurney,  a reporter for the Miami Herald
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Rabbi Yochanan Klein of the wonderful, wonderful organization "Healing Hearts" has done so much for Rebekah! 

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Rebekah and her favorite doctor-- Dr. Allison from the PICU <3 She gave Rebekah CPR and saved her life. 
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With sister Anna who has been the most sacrificial sister on the whole entire planet. 
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Our wonderful  Jewish Anesthesiologist who sang, "Dreidel, Dreidel, Dreidel" as he was taking her back and proclaimed, "BARUCH HASHEM" when he brought her back. It is terrifying to go under and he gave me great great assurance that he would take extreme measures of care with her life. 
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Our wonderful case workers Sherry and Gaile who have done so much to advocate for Rebekah and to get things done for Rebekah. They really know how to cut through the red tape. 
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Rabbi Klein brings Rebekah something sweet for Rosh Hashanah. If you notice, they are both wearing candy bracelets. 
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Another picture with Gad Elbaz.....  Israel's most famous singer. He is a really really great guy.  Aside from being famous he is just a really good person. 
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Rabbi Klein arranged for an Alligator to be brought to the hospital and then we snuck Rebekah out to see it. lol. 
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Rebekah had a dream of getting to see a "real alligator" and Rabbi Klein went ALL OUT to make it a reality. He is such a wonderful man and a wonderful rabbi that devotes his whole entire life to taking care of sick children. 
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Having Chinese with "Edelstein the Mensche from Atlanta" -- he went ALL OUT to take care of Rebekah while we were in Atlanta. 
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The St. Louis Blues Hockey Team came to visit while we were in St. Louis. 
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Dr. Grady,  a wonderful doctor who is one of the few doctors performing Pott's Shunts to try to keep these PH kids alive longer. He is a great doctor. 
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REBEKAH FIGHTING FOR LIFE

Epinephrine. Rebekah put in the fight of her life to stay alive this night.
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Blood Transfusion
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Nuclear Testing
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Sometimes it is just so hard
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Nausea 
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When Rebekah is incapable of breathing on her own
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Recovering from heart surgery
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Many tears
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"Bad days" ... when it seems it will never end


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Growing up in Hospitals
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The BiPAP machine has literally kept Rebekah alive on more than one occassion
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knitting 
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There were some days when all seemed hopeless but HASHEM saw us through and has given us so many miracles.
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Rebekah often spends many weeks on forced oxygen until she can breathe on her own again.
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So nice when the nurses come in to do the kids hair.... because other wise they get bed head and a giant mass of tangles. 
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EVERYDAY LIFE

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Temple Moses 
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Rebekah's 17th Birthday-- Every year is a miracle and something to celebrate
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The Florida Gators... Rebekah is a fan!
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Rebekah made it on to the Front Page of the Miami Herald! 
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Hanukkah in St. Louis. We go all out.
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Rebekah made 3 dollars recycling boxes! It feels so good to save the planet!
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Purim
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Down at Holtz Children's Hospital
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Rebekah with uncle Ari.... (painted in the backround lol).
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Visiting the Holocaust Memorial in Miami Beach
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Holocaust Memorial of Miami Beach
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SLOTHS 

Rebekah is an Avid Sloth collector.  This is her spirit animal. 

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A new baby for the collection
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Rebekah's "support group" that we pack up and drag along to appointments. 
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Mr. Sloth accompanying us to Kohn's Kosher Deli.
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A hospital bed full of sloths.
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Sloth Slippers!
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There is her support group again
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  • Brotsky Brotsky 
    • $5 
    • 11 mos
  • Hershel Lebovits 
    • $100 
    • 13 mos
  • Brotsky Brotsky 
    • $5 
    • 14 mos
  • Phillip Sobel 
    • $100 
    • 14 mos
  • Anonymous 
    • $18 
    • 14 mos
See all

Organizer and beneficiary

Tzippy Cohen 
Organizer
Miami Beach, FL
Rebekah Lewis 
Beneficiary
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