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Keeping Rebekah Alive

$5,493 of $10,000 goal

Raised by 166 people in 20 months
Created October 16, 2017
CALLING ALL HEROES...

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 

My daughters name is Rebekah and we are going through a hard time.  If you can imagine going through life having to plug your nose and breath through a straw then you will have an idea of what life is like for Rebekah everyday.  Rebekah's lung arteries are constricted and the oxygen can't get through sufficiently.  Life for me, as her mother, feels like standing in the a hallway that is collapsing on all sides and trying to hold the ceiling, walls, floor open with my arms and legs. I am always in a war to open up her arteries and it is no easy thing.  It is the hardest thing in the world to have to watch your own child suffocate and to live in a sea of oxygen that is not accessible to her. 


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My daughter has a terrible disease called Pulmonary Arterial Hypertension.  The name does not sound "very serious" but it is actually a devastating disease of suffocation .....which is progressive and for which there is currently no cure!  A picture is worth a thousand words so please look at the picture below to get a better understanding of what the arteries in Rebekah's lungs have succumbed to :


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Even though this is a lung disease most patients with this disease end up dying of heart failure.  We have had two heart surgeries (ASD + Potts Shunt)  to preserve Rebekah's heart and buy her time. 

This doesn't resolve the underlying problem of lung disease.  Rebekah's lungs have progressed to the late stages of this disease (there are 5 stages of this disease and she is currently a 4).. Her lung arteries are constricted and she, consequently, has trouble getting oxygen.   Everyday I work diligently and vigorously to preserve Rebekah's lungs through every method that is available to me-- driving down the inflammation in her lung arteries, keeping her blood thin and with plaque,  and extremely potent vasodilators.  Until there is a cure all I can do is treat the symptoms and I do this by hitting back at every angle possible. 

There are several scientist working on a cure.   Generally, it takes 7 years for a drug to get through the phases of testing to be "FDA approved" but in 2018 the "Right to Try" bill gave patients with a terminal illness the "Right to Try" -- drugs that have passed Phase 1 of testing. Phase 1 is the safety phase. So once a drug is proven to be safe then patients with terminal illnesses can have "access." However everything has to be paid for out of pocket. 

Other than that I spend many hundreds of dollars every single month just on supplements that drive the inflammation down in her lungs.  I have to purchase these to keep Rebekah going, whether I have money or not, so I am always several thousand dollar in debt. 

We are extremely lucky to live in 2019.  A decade ago there were no treatments for this disease and patients died within 2 years.  Now we have many treatments and so many people working on new treatments, new innovations and technology, and a permanent cure for this disease.  It is a very hopeful time to be alive for which I am so grateful. 

But at the current time I am still fighting with everything that I have inside me to keep my child alive everyday until a permanent cure is found.  The average life expectancy for this disease ***with the current treatments available*** is  5 years .... and we are now in the 6th year! BH! Every day that my child is still alive is the best day of my life and I am grateful. 


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.  The sloth is her spirit animal since she also has to do everything very slow due to the fact that she can't breathe and her heart and lungs over work 24/7 without a break. 

If you would like to contribute "anything sloth" to Rebekah's sloth collection it would really make her day.  Her address is the following:

Rebekah Lewis
P.O. Box 415606
Miami Beach, FL 33141

If you would like to contribute to Rebekah's DREAM of owning a real sloth:

https://www.gofundme.com/makeawish-sloth-poodle-fund  (saving life comes first but this is Rebekah's little dream). 

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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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--SPECIAL THANKS--

Special thanks to Rabbi Dovid Kaplan who has stood with me through all the tremendous turbulence through so many years and always been consistently there to give me hope and to help Rebekah in every way possible and too many ways to even count. He is the best Rabbi in the whole entire world. 





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REBEKAH THE HERO

This is a picture of Rebekah when she was a tiny thing wearing my bunkers... before we ever knew she was sick and when life was "just normal."  She is my biggest Hero. I have had to watch her suffer every day for 6 years, lose freedom, lose friends, loser her childhood. I have never seen anyone endure so much or fight so hard to stay alive.  She is a good girl and she never deserved any of it. Infact, I can't think of anyone less deserving all this suffering.  I am blown away and amazed by her everyday.  I think she has gone through everything that a person really go through and everything a person will go through in an entire life time..........   before she has ever even become an adult.  Thank you to everyone who has valued her life and the immense amount of our pouring that has gone into helping her stay alive! Life is such a precious, precious gift. 

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ALL FUNDS are deposited into a  Third-Party Special Needs Trust in the care of a third party.  Medical equipment, Medications, Treatments are purchased directly by Third party.  Rebekah/Rebekah's caregiver do not have any direct access to funds. They do no deposit into Rebekah or Rebekah's cargiver's bank account nor do they have any immediate or direct access to funds.  Funds are deposited and handled by a third party to purchase medical equipment, medications, treatments. 

All legal issues are handled by Glantz Law Office. 

GLANTZLAW
7951 SW 6th Street
Plantation, FL 33324

Thank you. 

Rebekah Lewis/ Tzippy Cohen
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Yom Ha'atzmaut .. Happy 71st birthday Israel
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::UPDATE:: So Wonderful News over Yom Kippur. Dr. Mark Grady of St. Louis Children's hospital called and said that Rebekah is not disqualified from the Pott's Shunt surgery--- this is based on his team reviewing her most current Ecocardiogram which was sent by FedEx. If you remember the last Ecocardiogram I took pictures of-- that one was specifically done by Dr. Aladdin to sent to Dr. Grady. Dr. Aladdin has been exceptionally kind and stepped in and stepped up to act as an advocate for Rebekah and has just done so so much to help us. So as far as the Potts Shunt, even though Rebekah had already been approved, things went so drastically bad after her heart surgery-- and when she coded and all that other stuff she went though it damaged the left side of her heart-- SO WE DID NOT KNOW IF THE POTTS SHUNT WOULD STILL BE ON THE TABLE FOR HER. Infact, Dr. Rusconi told me that he did not think it was an option any longer so I just became immensely immensely depressed and without hope. But then her last eco showed that her left heart had healed and improved quite a bit. Long story short-- Dr. Grady called and I was almost already certain he would deliver bad news--- so I sat and waited for it AND GOSH IT TAKES ALL DAY TO GET TO THE NEWS WHEN YOU ARE GOING THROUGH EACH SENTENCE WAITING FOR THE DOCTOR TO GET TO "THAT PART." It was almost like torture. But I had already prepared myself for bad news and I already told myself that when I got the bad news I would not get discouraged I would just keep working to make Rebekah better and strong enough to be able to have the surgery. He ended up giving me good news and it was such a huge relief. I felt like running around the house like a chicken screaming. Now it is no guarantee because they could decide other wise when they examine her in person but so far so good! And I am grateful! So the other great news is that Dr. GRADY said ... rather than just doing the typical Pott's Shunt Surgery they can just go right through the PDA (Pactus Ductus Arteriousis) that was formerly closed. Essentially, while they cannot take out the "Mesh Wiring Stuff"--- because the flesh grows into it and it becomes part of the body (so its can't be removed) ... They CAN go through it.. basically cut a channel through it. It will basically give her.. her PDA back and put her back into an Eisenmengers state, ALBEIT not such a large one (her orginal PDA was so big it took two mesh plugs to close it instead of one. So the other issue I asked about-- was whether they would have to take out the ASD-- the whole between the two upper chambers. This was a great concern to me because taking out a stent is much harder than putting one in. So they doctor said that it would depend on how "blue" she got. But if she got too blue he said they could just easily plug the ASD. He also said that the has done a Potts Shunt on many kids who have the ASD and it did not effect them at all. Basically the ASD works as a trap door so that when the pressure in the lungs is too high and blood has no where to go-- it can exit through the trap door and the blue blood goes back into the system. The Pott Shunt, I guess, is similar but it keeps the oxygenated blood in the upper extremities and the lower extremities get less oxygenated blood. But this relieves a lot of the pressure and a person can live longer this way because you don't necessarily need great oxygenation in your toes but you definitely need oxygen in your vital organs. ANYWAYS I am excited about the possibilities of putting her back into an Eisenmenger's state. Back in the day, before she had the PDA closed--- she use to be able to do everything that normal kids did.... running, cartwheels, back bends. She did ever sport that there was. Once she had the closure she developed severe Pulmonary Hypertension and that was it-- her life was over. She could no longer do any of the things she had done. So I have been begging them to take the PDA closure out for 5 years and they have said, "we can't" but now there is the potential to just kind of drill through it and create a new hole. It is a little bit different then the regular Pott's Shunt but for me its the greatest thing in the whole world. I mean there is the hope of being able to put her back the way she was. No she was not "perfect" before-- she always came in last place in running.. but she was was better off then she is now, at least she could run. I remember she had the surgery to close the PDA and that was a rap. I remember she played softball at the time and after the surgery she just couldn't even run to a base anymore. It broke my heart. So anyways, of course, those days are gone now and we are not trying to play baseball anymore but gosh I would give anything for her just to be able to walk around Walmart. About a year ago she lost the ability to be able to Walk around Walmart anymore and people don't know how much I value that and miss that. With this disease, even though you know it is progressive, still you never really think you will lose this and that-- but one day it happens-- then you would give anything just for those things you once had-- walking around Walmart. I miss that so much. I always beg HASHEM to just turn back the clock.
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I have tried to keep Rebekah on a vegan diet over the years but have just been met with extreme hostility and resistance... which has just worn me down and exhausted me. She went out of her way to be defiant so even if we were being vegan she would eat things like baked potatoes loaded in vegan butter--- which just defeats the point. So what I mean by extreme resistance is extreme bickering, complaining, huffing/puffing, attitude, ugly noises, tantrums, and outright defiance. Needless, to say, it wears you down. This is the first time that Rebekah has been compliant and has been trying just because she has lost almost all capacity to move or breathe. So anyways, its been very hard to get past the "instant gratification" type thinking with her.. and get her to care about seeing long term results. She has always loved food since she was born, which I thought was so strange because food always meant very little to me. Infact, the only reason food became a significant object in my life was because Rebekah was so into it and essentially she MADE IT a aspect in my life. But growing up I never liked food. I essentially was made to eat and got a spanking if I didn't eat. So eating was just something you did and got over with. I never ever thought of it as anything pleasurable AT ALL! And, of course, growing up we never had snacks. There were no donuts, cookies, chips-- or any such things in my life or in my house. But then Rebekah was born and I had to literally lock the refrigerator with a bungy cord because I would find her in the refrigerator eating butter and mayonnaise. So she always viewed eating healthy as some kind of torture or just a horrible horrible awful thing and something to resist. Infact, one time I came to pick her up from practice and she was in the stadium stands .. eating Nachos with a coach. She told the coach I was starving her apparently (eating healthy = starving) so the coach looked at me as a child abuser and went behind my back (well really right in front of my face) to feed my kid junk food without my permission. This kinda became a common theme. And I learned that this whole generation was very sick. That they fed their own children foods that were going to end up giving them diseases (cancer, diabetes etc) but if you fed your kid healthy food you were a child abuser and no shortage of people to undermind your efforts since you were a "child abuser" and they were thus entitled to have no respect for your rights as a parent. Seriously, If you didn't feed your kids candy and chips you were a child abuser-- my generation (the parents) sadly. Anywhoo... This is the first time Rebekah has been trying or willing and it is exciting and hopeful. Hopefully, she will be able to see that eating is really not that great. Getting to live and to breath and to function is so much better than eating. So yea, I hope at some point she realizes that eating is not as great as she thinks it is in her mind. I know it is hard in this generation because 1) food is made to be everything 2) they put extreme amounts of oil, sugar, and salt in EVERYTHING to essentially-- hyper-stimulate our taste buds and create an addiction, essentially. But also when you get away from salt, sugar, oil, meat, dairy--- they all start tasting gross. Well salt becomes extremely salt when you don't eat it, sugar becomes excessively sweet when you stop eating it, milk just taste funny and bad when you stop drinking it, and meat-- well...... It is like eating a dead animal once you stop . You just lose the desire to shift dead meat around in your mouth. You know, dead animals.. dead carcass. You actually get to where you like the clean meat-less-meat products way better than meat. But anyways, life is so much easier when I am not met with resistance. The resistance just drains the life out of me and just makes "trying" a dreadful thing.
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Made a little collage. It really just makes me so happy just to see the look on Rebekah's face. She was just SO INCREDIBLY HAPPY. It is probably a weird thing to say but I have seen my daughters body quiver a few times. I have seen her body quiver when it (her body) was just fighting with everything in it just to stay alive. I saw her body quiver once with fear when a squad of police officers walked into our house-- they were actually there to help her but she didn't know that. And today I actually saw her body just quiver with happiness when her wheel chair rolled up and she spotted rabbi Klein and she spotted THAT ALLIGATOR. Anyways, It really does mean so much to me just to see that level of child-like happiness on her face. She has been talking about the alligator all night and I am just so happy that she got to experience that little piece of happiness today. Like Tim McGraw says, "Just to see you smile...I'd do anything" Anyways, it was an incredibly nice thing for Rabbi Klein to do and he did it all on his own.. Once he found out how much she wanted to see an Alligator he never stopped trying to get one to her. He even tried to bring one into the ICU and when that didn't work he had her wheeled down stairs. And to give you an idea of how much Rebekah wanted to see an alligator-- when we first got to Florida we were out in Ft. Lauderdale and Rebekah said so excitedly, "mommy is that an alligator swamp?" and I said, "no Rebekah that is a ditch" (I totally got a kick out of that). LOL
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$5,493 of $10,000 goal

Raised by 166 people in 20 months
Created October 16, 2017
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