Three years ago, when I was asked to choose one wish, any wish, I asked to be given the opportunity to start a center for childhood pancreatitis. A haven right here in San Antonio for hurting kids like me all around the world to receive proper care and medical treatment, as well as both emotional and financial support. I want these children to be given a hope, a reason to keep fighting, and relief from their suffering.

There is so little research on pediatric pancreatitis that children who suffer from it typically have no place to go, no place to receive treatment, and no hope for the future. They are uprooted from their homes and are shifted from state to state looking for unknown answers. Some are even given up on, and are sent home to die. For these children, this disease has resulted in many long years of pain and suffering with no relief.

Going through this myself, I always wondered why others would live a normal life, while I would stay for months on end in the same hospital room, too weak to even lift my head and receive visitors. The pain was unbearable, it’s something that no one can even imagine without having gone through it themselves. And for a child, with your whole life ahead of you, to be told you have to spend however little of it you have remaining in this kind of pain, unable to see friends or even go to school for an hour, is cruel.

A couple years after I myself was diagnosed, my parents and I started to receive phone calls and messages at all hours of the nights from the families of sick children. They wanted answers, they wanted to know how to get their child out of pain, and how to save their life. One by one, we would transport them here to San Antonio to undergo surgical operations and slowly, they would be able to get back to a semi-normal life. They would be given a chance to live a life outside of the hospital, even if they had to stay on home health care.

But after having your life slip right out of your hands, being given a small portion of it back is a blessing, and I got to see this blessing happen in the lives of these kids. After seeing all this, I decided one day I was going to change the face of childhood pancreatitis. There was no need for this suffering, and I was going to do something about it. I was placed in my situation for a reason, and even though it meant excruciating pain on my end, I wouldn’t trade the life I have now for the world. I can use my life to be a hope to other children, to show that you can get through this, and that you can learn to live no matter where your new “home” may become, whether it’s a hospital across the country, or on a home health care system at the Ronald McDonald House.

But these children don’t know that they have options. With every attack of severe pancreatitis, you have up to a 16% chance of death. For a child with chronic pancreatitis, you can have multiple attacks a year, increasing your risk as your pancreas becomes weaker and weaker under the stress. Unlike an adult, a child’s organs are still growing and forming, and permanent damage due to this can be lifelong with no reversal. Doctors don’t realize this. I myself have had many nurses and doctors who didn’t understand tell me I was making up my pain, and everything would be all right if I stopped pretending. It’s not their fault, they haven’t been trained in this, but it’s not fair to the kids. They feel like everything becomes their fault and that there is nothing they can do to stop it. They try, but they can’t stop getting sick and having to come back to the same hospitals with the same doctors who just don’t understand.

And that’s our problem.

We need to be able to reach out to hospitals and medical teams all over the world to show them how to treat and take care of these children, to show them that they have an option and a place to go for help. And above all, to love the kids. Show them they are not alone in this fight, that there are people here who really can understand them, and that we have treatment options so they can live life to their fullest, so they can be for once a normal kid, which is all they want. To be well enough to get dressed, a blessing many people take for granted, to be able to put on blue jeans and run around and play with a pet, to be able to sit for classes in school without falling further and further behind from the rest of the grade, to be able to eat a bite of food without spending the rest of the night unable to move from the pain. These are all things we take for granted, but things that are taken away from these kids.

Most importantly, we need a cure. While the transplant saves lives, it just buys time until someone can invent the next big treatment option. It’s not a cure, it’s a tradeoff from one set of issues for the next. Instead of now pancreatitis, you have to constantly worry about how much longer you have before all of your cells die. You can’t take a single bite of food without taking medicine, and you can’t get a fever without being checked into the hospital.

I want pancreatitis to be a textbook disease, something you can look at and know immediately how to get rid of it once and for all. There is no reason to let this disease dominate the lives of so many children.

I never want children to feel excruciating pancreatitis pain ever again.

And that is what Rebecca’s Wish is going to accomplish. That is what we are going to accomplish together, and we will change the lives of thousands of kids worldwide. From the child sitting in a hospital in India to the kid sitting in the neighborhood across the street, pancreatitis will no longer have a hold on our lives.

– Rebecca Elizabeth Taylor

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My warrior child who virtually never cries was in a fetal position of pain this week with silent tears streaming in a steady flow down her face.

Rebecca’s scar tissue growth from where she was stitched together during her transplant surgery is causing a partial blockage in her intestines. This blockage resulted in a full-on obstruction that had to be resolved immediately. The process of that resolution creates a perfect storm of pain every time liquid or food passes through her compromised system.

Therefore, Rebecca has lost almost 10 pounds in a little over a week. Yes, 10 pounds.

This is not a new problem, we discovered her scarring blockage this past summer. But it is deep in her intestines, and impossible to reach endoscopically without a specific tool that no one in the city of San Antonio possesses. So far, the surgeons we have met have hesitated preforming major surgery necessary to remove the scar tissue because they fear that, in Rebecca’s tenuous state, her recovery will be extensive, and the procedure could potentially worsen her current situation to the point she may lose even more portions of her intestines than she has already lost.

On top of her post-transplant complications, we are approximately 3 procedures behind from Rebecca’s growing scoliosis and severe osteoporosis state. Yet after December’s hospitalization and inflammatory set-back, every procedure is on hold until her immune system calms. And this scar-tissue problem is certainly not helping to calm Rebecca’s system….

Bless.

One of Rebecca’s doctors expressed concern over her current situation and suggested our Zoo event for Rebecca’s Wish charity in March might be too stressful on Rebecca. He did not want Rebecca to feel the pressure of hosting a fundraiser for others in need.

My child’s answer to this doctor’s fear was quick, clear, and concise, “I look forward to this fundraiser more than anything else. Helping these children keeps me going. It gives me purpose. Please do not take this away from me.”

The doctor just stared at Rebecca without response. Who has words for such a bold and courageous statement?

“Because we know that suffering produces perseverance; perseverance, character; and character, hope”, Romans 5:3-4.

My child’s suffering is not in vain, it has remarkable, life-altering meaning.  And that meaning provides Rebecca great hope.

Rebecca’s Wish and all that it embodies gives Rebecca a purpose in life – a charge – a calling.

Suffering is no longer the enemy, living a meaningless life is.

What if we all found our purpose through pain? What if we stopped thinking of our own current misery and redirect that all-consuming effort into helping others in need?

How different would our lives look? How different would the world look?

My daughter will host her Zoo event on March 30 with abundant hope and abundant joy. And while the Lord gives Rebecca Taylor breath on this earth, she will help every child she possibly can who is suffering from this cruel disease.

And Rebecca will continue to live an unexpectedly miraculous life filled with divine meaning despite her position of pain.

Thank you Lord.

Love to each and every one of you,

Christyn

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CREON, according to its manufacturer AbbVie, “helps break down food into nutrients.” It is a prescription medicine used to treat people who cannot digest food normally because their pancreas does not make enough enzymes either due to cystic fibrosis, chronic pancreatitis, removal of some or all of the pancreas (pancreatectomy), or some other rare condition. Children with severe cases of pancreatitis are likely to be prescribed this medication. Every child post pancreatic transplant must take CREON for the rest of their lives. It is the only way in which most of these children can eat; without it, I could not have a bite of food without checking into a hospital afterwards. Our family has a long-standing joke that if I was ever stranded on a deserted island, then I better have my CREON with me.

The past few years, the cost of CREON has increased drastically from around $900 per month to most recently $3,200 per month. There are some medications I can live without, but this is not one of them. My only option for survival is to spend the rest of my life in a hospital bed, or find a way to deal with the cost of CREON.

Life is defined by unexpected miracles. If you give grace with no expectations in return, I’ve learned at my house, that unexpected miracles will happen. That little plastic card for CREON turned out to be an extraordinary, unexpected miracle – or my version of a pot of gold.

Now with my new card in hand, our new monthly cost of CREON drops from $3,200 to $5. 

You read that correctly, because of my new card, the cost of CREON has been lowered by $3,195 per month! 

With the CREON on Course co-pay card, any patient with commercial insurance can apply to save thousands of dollars a year, and hundreds of thousands over a lifetime using this lifesaving medication.

The CREON on Course co-pay card, although new to me, is not something that just fell out of the sky. This card has been around for the entire nine and a half years that I have been taking CREON. Yet, not a single pharmacist ever mentioned this card to us until this summer.

Without an advocate specializing in pediatric pancreatitis, it takes chance meetings and word of mouth to spread information as important as this. Hopefully this article finds its way into the hands of more patients who need to hear about the CREON on Course co-pay card. I have heard stories of suffering kids, who opt not to eat because of the of the stratospheric cost of CREON and others who can’t afford the cost and so they end up in a hospital.

For anyone who needs to apply for a CREON On Course co-pay card, either talk to your pharmacist or visit www.creononcourse.com

Please share this article with anyone you know who is taking CREON. It might just change their life. 

With love,

Rebecca Taylor

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Adam had met many other children in hospital beds when he would visit me, the majority of whom did not have activities to keep them entertained. Some of these children did not even have parents to sit with them. So, Adam asked his bar mitzvah guests for donations in order to help him pay it forward. With his donations, he bought baskets overflowing with crafts, toys, and gift cards for the children of the hospital. 

When I walked into Adam’s bar mitzvah I was shocked to find stacks upon stacks of colored pencil bouquets filled with markers, colored paper, stickers, and every other possible craft supply imaginable. I fully believe that with everything that Adam collected, the hospital could build a glitter-covered, construction-paper rocket to the moon if they so wanted. But best of all, Adam will get to see some of the children and personally hand them the fruit of his labors. He will get to see just how much crayons and stickers, and most importantly, the knowledge that someone cares, can change a child’s outlook on an entire hospital stay. So, thank you, Adam, for your selfless gesture to help countless children. I hope you realize how much of an impact you have made. 

Here is the prophetic passage delivered by Adam’s during his bar mitzvah service about his service project for Rebecca’s Wish.

“For my prophetic text, I chose Leviticus 25:10… Proclaim liberty throughout the land unto all the inhabitants thereof. To me this means, keep doing things for others.  Keep looking at ways to help people.  Keep bringing freedom however I can to anyone. I chose Rebecca’s Wish as my Bar Mitzvah project.  Rebecca Taylor is a family friend of ours and she was diagnosed with a chronic disease more than 9 years ago when she was 7 years old. The organization Make A Wish asked Rebecca what her wish was. She wanted to start a foundation, which became Rebecca’s Wish.  This foundation focuses on research, and providing hope and charity to families like the Taylors.  In just a few years, Rebecca’s Wish has raised close to a million dollars.  Unfortunately, Rebecca spends a lot of time in hospitals.  I have been to visit Rebecca a few times in the hospital.  There are always children there that come to the hospital with no clothes, toys, blankets, or games because  they don’t know how long they will be there.  So for my project,  I collected items at home from friends, family and neighbors and we delivered to the hospital to give to the kids.  My prophetic text relates to my Bar Mitzvah project because by bringing needed items to families and children in the hospital, I am also bringing them freedom.  Freedom from needing.  Freedom from having to leave the hospital.  Freedom to be together with their loved ones.”

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Rebecca’s Wish Gala

Your laughs. Your love. Your light. They were all felt so strongly at our 2020 Gala on February 1st, and we are forever grateful! Here is a quick look back at the sights and sounds of the Gala. Because of your heartfelt generosity, we are making significant progress in finding a cure for pediatric pancreatitis.

It was a night of joy, tears, laughing, dancing and rejoicing – all while raising more than $500,000. We showed this video at the Gala because it underscores Rebecca’s commitment to the nonprofit she started and reaffirms one of our signature research initiatives. #RebeccasWish

Rebecca’s Wish President Christyn Taylor had this to say about the Gala:

“Katherine Wolf, a survivor of a debilitating stroke at the age of 26 wrote, ‘When you look another human in the eyes and see how they’ve found strength in the face of their suffering, it makes you sit up with a little more hope.’

Rebecca’s Wish Gala gave a nation full of hurting children a little more hope. 

Thank you for making this monumental event happen. It will be a night our family, and many other families, will never forget.

Love to each of you,
Christyn”

Here is feedback we received from guests of the Gala:

“It was a fabulous night with so many lovely friends & family at the Rebecca’s Wish Gala! Cheers to Rebecca’s dream of finding a cure for Pediatric Pancreatitis.” -Amy Thompson Stephens.

“I’m so proud of my sister, Christyn Russell Taylor and my niece Rebecca Taylor. They have turned tremendous pain into immeasurable blessings. They have made this world a better place for so many children. Words can’t express how much I love them and how thankful I am for their example in my life.” – Jenny Russell Winter

“Rebecca and the Taylor Family will always hold a very special place in my heart. Rebecca’s Wish is truly changing lives by helping critically ill children and their families. I am in awe of this beautiful young lady, and it was an honor to attend the Rebecca’s Wish Gala last night. I am so blessed ” – Joy Ulcak

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