Farewell , sweet Supergirl Kayla.

$55,540 of $100,000 goal

Raised by 459 people in 27 months
On Sunday, September 10th, Kayla went home to be with Jesus, her Savior and Friend.
Today , September 15th, was Kayla's memorial service. It was very honoring and uplifting, and it highlighted just how truly special Kayla was. Thank you to everyone who attended, and to everyone who could not attend but has been following her story. Kayla's struggles are over as she now enjoys a new, perfect body in Heaven , but the family is devastated and can really use your prayers in the coming weeks and months. Also, they are staggering under the weight of so many medical expenses and the cost of the funeral and burial. Please continue to generously donate whatever you can to this campaign as a final gift to beautiful Kayla. Please also help us to raise awareness of rare diseases and support research efforts  towards finding a cure by posting this link as your Facebook status. As Kayla's dear friend, Shira Rose said today, "Super heroes aren't invincible. "  We need your help.  Thank you for your support. 

Previous posts:

Hello, wonderful friends and supporters of Kayla Andrade and her family. I want to share this update on Kayla 's health and the next steps for her from a letter from her mom, DeeDee.

"March 18, 2017 was the last time Kayla ate.To date, she has lost 30 lbs. Kayla's stomach has completely stopped moving. She is 100% dependent on her feeding tube. Her body is only tolerating about 700 KCal/day of the formula that is going through her feeding tube. 700 KCal/day is not sustainable. She is currently being medicated for the pain in her stomach just to be able to make it through each day and night. The nausea has been increasing, and the bloating that has come along with all of this keeps her uncomfortable.
Getting Kayla's stomach to move again, and her body tolerating food is imperative to her quality of life. She has been fighting her body for a very long time, and this round is taking a toll on her.
It will take a team of 5 doctors, scattered throughout the United States to give her the best shot possible. In addition to the cost of travel and lodging, there are expenses of: tests not covered by insurance, off label medications that are not covered by insurance, a doctor who is cash pay only, and a machine that is not covered by insurance. These expenses are overwhelming in addition to the $52,000 out of pocket expenses (that we must pay ) just to maintain her each year.

The problem with rare diseases is that there is little research behind them. Little research means that insurance does not recognize the mode of treatments and tests as necessary. Even with the doctors fighting the insurance, rarely do they cover what needs to be covered.
This journey is long and hard. At this point, her quality of life is dependent on the ability to pay. "

The estimated costs of the travel, doctors ' fees, treatments, medications, and a machine to help activate her stomach exceed $23,000. This is in addition to the
$20,000 already spent since December on the Mayo Clinic, seven weeks of hospitalization in Long Beach , medications, her regular appointments, infusions, and
treatments. Your generosity helped so very much to lighten the burdens of this family previously. Now I am asking you once again to help by donating generously to this campaign, even if you donated before (no amount is too small, and every little bit helps); to  re-post this gofundme campaign to every one on your friends list; and to pray for Kayla and her family. Please pray for pain relief, for her stomach to begin working again, for encouragement for the whole family, and for their financial needs to be met. No one ever asks to be on this journey. It is hard and lonely and scary. Let's let them know that they are not alone. God bless all of you.

Original post  (created November 18th, 2016):

Hi, friends.  My name is Leslie Howard.  I recently retired from classroom teaching after a wonderful 37 year career.  I am currently teaching one of my former students, Kayla Andrade, at her home, because she is ill and no longer able to attend regular school.  Kayla is 14 years old, as smart as a whip, funny, kind, and wise beyond her years.  She loves Jesus with all of her heart.  Since she was only a few weeks old she has been fighting devastating illness, having currently having been diagnosed with nearly 20 different diseases, any one of which would be a challenge for most of us all by itself.  She suffers from EDS, Potts syndrome, systemic mastocytosis, epilepsy,  common variable immunodeficiency, dysautonomia, exercise induced anaphylaxis, gastroperisis, gene mutations, blood clotting risks,  and cardiac arrhythymias, to name just a few. She must use a wheelchair any time she will be out of the house for any length of time. They live in the Bay Area, but she must fly to Long Beach in Southern California every other week for treatment, and must have day long infusions to boost her immune system every three weeks at home.  Now she has also been diagnosed with limbic encephalitis, which can be caused by a rare form of cancer and tumors, and she must fly to the Mayo Clinic in Minnesota for further tests and treatments, as it is the only place with the specialists that she needs to deal with her extremely complicated set of issues. She is scheduled to fly there the Monday after Thanksgiving, so raising the money quickly is critical. 

Her wonderful parents, Spencer and Dee Dee,  work so hard every day to help Kayla, to raise their two younger daughters, and make ends meet.  They are the first to offer help to others in need, but now find that they are in need of help themselves.  Even if they empty out their small savings account, they will not have enough money to cover transportation and their share of the treatment costs to help Kayla for this trip.  In addition, the family's out of pocket expenses for Kayla's meds and treatments exceed $50,000 yearly, and is an ongoing expense.  You must know that these people are humble, positive, and bring sunshine into the lives of everyone they meet. I love them deeply, and my heart hurts to see the struggles they face, but their faith is rock solid, and they know that God is in control and that He is good.  Please help them to save Kayla by donating as generously as possible through this website today.

Please repost this to your Facebook friends, too!

Thank you so much for helping,  May God richly bless you, everyone!
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Dear friends. It has been nearly two months now since Kayla went to be with her beloved Father in Heaven . I hate to ask again, but her family really needs our help. The medical bills are rolling in, and the amounts are staggering. Here is a recent post from Kayla's mom, DeeDee's Facebook page.

$581,150- the amount it took to get Kayla from Riley Children’s Hospital in Indiana to Miller Children’s Hospital in Long Beach. To which insurance states “not covered total as $581,150.”

Dealing with their grief is hard enough, but to be faced with these bills is paralyzing. If there is anyway that you can contribute one more time, I know that they would be beyond grateful. Thank you so much for all of your past support.
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As you most likely know by now, Kayla lost her valiant fight against rare diseases on Sunday morning, in Long Beach, California. As you can well imagine, the family is devastated.
Here are some words from her mom, DeeDee.

"Our life baby for almost 15 years. I would give anything to snuggle with you again. I am thankful you are in Heaven and are whole again. My heart is shattered trying to live without you."

What DeeDee did not mention is the astronomical medical expenses and burial costs that they must now face on top of everything else. It is estimated that their out of pocket expenses will top $100,000. Thank you all for the generous gifts for them through this gofundme site. If you have not yet donated or have thought at all about donating again, now would be a very good time to donate. Let's all do this one last thing for Kayla and help her family reach this goal so that they can stop worrying and turn their attention to healing their broken hearts.
We love you and miss you so much, sweet Kayla.
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Today my beautiful and amazing student, Kayla Andrade, lost her long and valiant struggle with her uncooperative body and went home to be with the Savior that she loves. She would have been 15 years old on October 8th. Kayla was smart, funny, spirited, loving, and brave. Her smile, which she wore constantly despite the pain she lived with every single day, could light up a room. Her face glowed as she talked about her friends, her favorite band (One Direction ) , and just about everything else. She had a great sense of humor and a contagious laugh. She could (and did) speak knowledgeably about current events, and she held strong opinions about the current state of affairs in our nation. She was a very quick study, truly brilliant in math and science. She loved to learn, and pursued excellence in all she did. She understood and could articulate every detail of her complex medical issues, and was a great self-advocate with her medical team. We had many, many long talks, and it was like talking with another adult (except when she would talk about boys; then she was a typical giddy teenager!) She gave the best hugs ever, every single time she saw me. She lived her life to the absolute fullest, and taught me how to live under a cloud of adversity with grace and positivity. I will miss her intensely, and I will never forget her. Kayla, our supergirl, you fought the BEST fight! Now enjoy your flawless new body in your new eternal home. We will see you again. I love you.

To all of my friends reading this: If you are at all inclined to help Kayla's family, they are suffering not only the grief of losing her, but also from crippling medical bills, as well as auxiliary costs from pursuing the best care for Kayla, such as the cost of airfare, and a MediVac flight for Kayla and DeeDee; hotel costs while they were at various medical facilities around the country, lost wages for Spencer, Kayla's dad; and now they must pay for a funeral. If you are at all inclined to help, please go to the Gofundme website: gofundme/kaylaandrade. Any amount helps. I would love to see them so supported financially that they can take their monetary worries completely off of their plates at this devastating time. Thank you so much for your concern and help.
Beautiful Kayla. Always smiling through the pain.
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I wanted to give you all an update on Kayla. Since March, Kayla has been in the fight of her life. When I first met Kayla she was a student in my sixth grade earth science class. That whole year she presented as the very picture of robust good health. Of course her underlying medical issues were always there, but she never stopped smiling, was surrounded by friends, and was a straight-A student. She never complained about her physical limitations or her pain. By the time she was in my 7th grade life science class Kayla was starting to struggle. She had episodes of great pain and eventually was unable to attend class anymore due to frequent hospitalizations in the need for medical treatments even at home. She landed at Miller's Women's and Children's Hospital in Long Beach for a while, and was then sent to the Mayo Clinic in the dead of winter but no improvement was on the horizon. When I retired in June of last year, the school district asked me if I would become Kayla's home / Hospital teacher, an assignment which brought me joy, because to know Kayla is to love her, and love her I do, deeply. Over the months that I have been her home teacher, I have watched Kayla struggle more and more. Always sharp and inquisitive, she became more and more lethargic and had difficulty concentrating, due to an increase in intracranial pressure and the effect of her medications. On the last day that I taught Kayla in March she asked her mom to make her a salad with salami, and as she ate we sat there and talked. That day was the last day that Kayla ate solid food. Her stomach just stopped working, and trying to eat left her in excruciating pain. Assume a feeding tube was placed and she began getting nutrition. However, she was only able to tolerate 700 calories a day, much too little for a girl her age. She continued to lose weight until now she is at least 40 lb below her previous weight. This summer she has been in the hospital at Long Beach, at a hospital in Texas to try a machine there that was supposed to stimulate her stomach, but rather brought her excruciating pain, and chewy Hospital in Indiana where she was supposed to have a test. Unfortunately while she was in Indiana, Kayla developed a severe infection, and went into anaphylaxis twice. All this time she continued to lose weight., and she began to be intolerant of the feeds, eventually only tolerating 300-calorie per day . She was unable to complete the test that she went to Indiana for. It was decided that she would need to be Medevac'do back to her home Hospital in Long Beach, because she was too frail to fly commercially. For the past two weeks she has been at Miller's, and they are still trying to figure out how best to help her. She developed another raging infection, or perhaps the same one recycled, and this morning there was concern that she may have had a perforation of some part of her digestive system, a condition which would lead to immediate surgery. This would have been a terrible situation, however because she is very very frail and such a surgery would be very risky. This afternoon, Didi texted me to let me know that the more recent X-rays showed there was no perforation! This is fabulous news, but Kayla is not out of the woods yet. She desperately needs your prayers, as do her parents, her little sisters, and both sets of grandparents who have been rock stars through this whole thing, stepping up to take care of the little girls so that DeeDee (and Spencer, for a while) could be with Kayla. This is so hard on the entire family, as you can imagine. In addition to the strain of being apart for weeks and weeks on end, the medical bill , the airfare , the cost of hotel accommodations, the specialty tests, etc are beginning to pile up. Also, the owners of the house where they have been living in Dublin wants to move into the house, so before this latest round of hospitalizations occurred DeeDee was busy trying to find another house with 4 bedrooms that they could afford. They need a 4th bedroom to accommodate Kayla's infusion nurse. If you know of any houses in the Dublin, California area with four bedrooms and a fenced yard for under $4,000 a month please private message me or call Deedee if you have her number. The landlords are graciously allowing them to stay for now, but I know that it would be a great relief to have alternative housing lined up. Also, please donate to this campaign to help DeeDee and Spencer with their astonomical medical and related expenses. Even if you have donated to this campaign before, please consider donating again. Any amount is welcome, as it all adds up. And above all else, please continue to keep Kayla, DeeDee, Spencer, Kadence, and Kalia in your prayers. We serve a mighty and Sovereign God . None of this surprises him, nor is it beyond his ability to heal Kayla completely. After all he made her; he can make her new again!
Fight on, Warrior Ptincess!
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Alexa Kenny
17 months ago

Rest in love sweet Kayla. Love to you Dee Dee, and your precious family.

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$55,540 of $100,000 goal

Raised by 459 people in 27 months
Created November 18, 2016
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Megan Goodfellow
15 months ago

Bless you Kayla, we all miss you. You are forever in our hearts. I know Heaven must be beautiful now, because you are there.

16 months ago
16 months ago
Steve Howard
16 months ago

All the best to you and your family.

Alexa Kenny
17 months ago

Rest in love sweet Kayla. Love to you Dee Dee, and your precious family.

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