Farewell , sweet Supergirl Kayla.
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.
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!
$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.
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.
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.