Behind the Scenes part 2

What can we do?

Here is a great article written by the founder and director of Under The Same Sun. This group helps with public education and dispelling the myths about albinos. There's also a short video that shares the issues facing albinos in Africa.

New YouTube Channel!

Writing is normally a lonely job, with lots of long hours working alone. This past week, Lynne and I got to actually spend some time together face to face in the same room! A lot of people have been asking us about how we co-wrote Ghost Heart, so we made eight short videos sharing that very experience and will be posting them over the next few weeks. Be sure and sign up here for our You Tube channel!

Behind the Scenes Part 1 from Lisa Harris on Vimeo.

Interview with Kim Gilson

One of the heartbreaking issues we examine in GHOST HEART is the financial, physical, and emotional strain parents face when caring for a critically ill child. These dedicated parents make it their mission to become as medically informed as some doctors when it comes to protecting the welfare of their child.

We’d like you to meet Kim Gilson, a single mom of two boys with the potentially life-threatening disease of juvenile diabetes.

1. Thanks for sharing your story with our readers, Kim. Tell us about your youngest son Cade. Two weeks before Cade’s 1st birthday, I read a letter to the editor in Parents magazine about juvenile diabetes. One week later, Cade began to show symptoms that had me very puzzled and that article kept nagging at me. He was peeing excessively, breathing rapidly, sleeping constantly, and losing weight. Finally, on a Friday afternoon, I realized we needed to get in to see our doctor before the weekend. I grabbed my mother and a credit card and we headed out. The doctor agreed to check Cade for diabetes but said it would be the youngest patient he’d diagnosed in his years of practice. He came back and told us that Cade did have diabetes, was very sick, and needed to be admitted to Children's Medical Center immediately.

2.     Mother’s intuition is a real thing, huh? What was your biggest fear when you heard the diagnosis? Cade was in a diabetic state called DKA, which has a 10% mortality rate. Death was a very real possibility. There was also the danger of brain damage. I will never forget when the doctors told us he was finally out of the woods, I asked, “He'll grow out of this right?” Learning that he would have it the rest of his life or until someone discovers a cure was sobering.

3.     Describe some of the insurance hurdles you’ve faced. Our family has been very fortunate in that we have had good insurance, especially compared to many we have known. But even so, 2012 was a particularly bad year for us. Cade had to have a new insulin pump and Trent, our oldest son, was diagnosed with diabetes and had a hospital stay. That was also the year I’d decided to switch our coverage to the low premium/extremely high deductible and out-of-pocket maximum option.  Thankfully, when Trent got his insulin pump, I learned that when you have two children on a pump through Medtronic you get a 20% discount! Now that the boys are in college/high school, I pray they pursue careers that offer good benefits when they’re out on their own.  Keeping up with the financial strain meant I had to learn all about insurance benefits, co-pays, deductibles, and the difference between a flexible spending and an HSA account. It’s unfortunate that you don't typically learn that information until you are in a position of desperately needing it.

4.     What were some of the experimental offerings? Did they work? What did you think each time you had to make one of those hard choices about letting them use your son as a guinea pig? Cade was the first “little kid” at Children's to go on insulin pump. It was life altering and allowed him to live a more “normal” lifestyle while still maintaining good control. The upside to the expensive pump was so exciting that making sure he got one was an easy decision!

5.     What kind of toll did Cade’s condition take on your family? Having a one-year-old on insulin was like bringing home a newborn. We would set alarms to take turns checking his sugar in the night. I always had trouble going back to sleep! We were exhausted for several years. When the boys got old enough to go places with friends or have sleepovers, it was extremely stressful. Despite our constant fear, we felt it critical that they lead normal childhoods, even though it was easier and safer to keep them home with us.  The worry is still always there. The boys often do not feel the same sense of concern, and some of that is good. You don't want them to live in fear but you also need them to have a healthy respect for the illness that kids don't really want to address.

6.     So, what did you think when you found out your oldest son had the same condition? We were shocked because Trent’s diabetes was caught early, before he had any symptoms. His pediatrician caught it in routine screening because she’d been watching him closely. While not what I would have wished for him, it was a much easier adjustment because we already knew how to manage the disease and Trent had seen his brother deal with it so much that he really knew what to expect. We knew the medical bills would double!

7.     As your oldest son prepares to leave for college in a few days, how does turning his health care completely over to him make you feel? He’s got the latest insulin pump which both reads his sugar and adjusts his insulin. If he will use the technology, he should have no issues. He is actually much more stable than Cade. But at the same time, his health does add a layer of concern to him leaving the nest. I worry about the crazy schedule, eating, and his general health. He’s going to do marching band, for Pete’s sake. But at the same time, I don’t want to say I don’t think you should do something because of diabetes. I never want to stand in the way of my boys living their lives.

I hate to tell you this, Kim, but I don’t think mother’s ever quit worrying about their kids. But you’re right, we never want to stand in the way of them living their lives…thus the reason we’ll do whatever it takes to make sure they can be successful as possible.

Thanks so much for sharing your journey.

Interview with Don Sawatzky from Under The Same Sun

                It’s been over a decade since Lynne and I first decided to write this story, but to us it’s more than just a book. We know the plight of albinos isn't fiction. There are people who live in fear every day because of superstitions. We’ve had a number of readers ask what they can do to help these people, so Lisa recently reached out to a non-profit that works with albinos in Tanzania, Under The Same Sun.

                Peter Ash, the Founder and CEO of this non-profit, says. “I have a dream that one day people with albinism will take their rightful place throughout every level of society, and that the days of discrimination against persons with albinism will be a faint memory.”

                The goal of Under the Same Sun (UTSS) is to work to change attitudes and behaviors toward people with albinism, beginning in Tanzania. They do this through education, teaching people with albinism their rights and how to take care of health issues, and ensuring they have access to education.

                Don Sawatzky, Director of Operations with Under The Same Sun recently spoke with us about this work. Here’s what he had to say.

                LISA: Thanks so much for talking with us today, Don. Can you give us a brief overview of what Under the Same Sun is involved in and why it exists?

                DON: Under The Same Sun helps people with albinism overcome often deadly discrimination through education and advocacy. Our Education Program provides people with albinism in Tanzania a high quality education in a safe, inclusive environment where their low-vision, health needs and other needs are also met. Our Advocacy and Public Awareness program educates people on the truths about albinism and fights for the inclusive human rights of people with albinism in Tanzania, at the UN and in many other countries. We have offices in Vancouver, Canada and Dar es Salaam , Tanzania.

                LISA: How long have you been involved in Under the Same Sun and what was your motivation to become a part of this organization.

               DON: I was the first full time employee at UTSS and have travelled with Peter Ash to Tanzania and beyond since our first trip in October of 2008. Peter Ash is a person with albinism and my personal friend and so I understand albinism at a personal level. I have also worked with human suffering all my adult life and care about how PWA have suffered at the hands of those living close to them.

                LISA: The plight of the African albino weighs heavily upon our hearts. While we have tried to raise awareness, what do you find is the most effective method?

                DON: We believe that advocacy and education are most effective and have made them our mandate; the more up close and personal the message, the more powerful the effect. “Education is our greatest 'weapon' against discrimination and our most powerful source of advocating a culture towards change.” An educated person with albinism taking their rightful place in society is by far the most persuasive message of all.

                LISA: What are the greatest needs of albinos?

                DON: To break all the mythology and misunderstanding that surrounds them and simply be accepted as a normal every day human being just like everyone else. They are not more special or more cursed than anyone else. They are not ghosts and they are not gods; they’re just people who happen to have a genetic condition. This is why we use the term PERSON with albinism or PWA instead of albino. They are a person first, not a genetic condition first.

                LISA: Can you share with us a personal example of how your organization is making a difference?    

                DON: UTSS cares for disadvantaged students with albinism in Tanzania, placing them in select boarding schools, where they are protected, integrated, and provided with the tools they need to learn. People with albinism, with the help of our donors, can complete any level of schooling from primary school to PhD. We've helped over 400 students in our education program since 2010 with over 85 graduates. After grad we offer vocational training and ensure career placement. We have a dream that one day people with albinism will take their rightful place throughout every level of society, and that the days of discrimination against persons with albinism will be a faint memory.

LISA: Thank you so much, Don, for taking the time to talk with us. For those of you reading this interview, if you want to learn more about this amazing non-profit, please visit their website for an overview of not only what they are involved in, but photos and extensive information on the difficult issues facing albinos.

Born Too White

Over ten years ago, Lynne ran across an article in a newspaper that talked about albinos being killed for the magic in their skin.

It was a story that she couldn't forget.

As she started looking further into this, she came across a powerful video by JuJu Chan. Here is another, more current video, put out by the BBC, that tells the story of being born too white.




Lisa & Lynne

Organ Trafficking

While the hunting of albinos is an intricate part of the story of Ghost Heart, there's another issue that comes into play as well, and that is organ trafficking. This issue--which is tied to human trafficking--has become a huge international blackmarket business, mainly because the demand is so much greater than the supply.

According to the Washington Post, "As of early 2016, 100,791 people were waiting for lifesaving kidney transplants in the United States. Yet in 2014, only 17,107 kidney transplants took place there. That year, 4,761 Americans died while waiting for a kidney transplant. 

The World Health Organization, says that more than 10,000 black market operations take place around the world every year. That is more than one every hour. You can watch a short National Geographic video here about a man struggling to find a kidney here.

While I was busy with all the last minute book release things a few weeks ago, I stumbled across this new movie that is just coming out. While I haven't seen the movie (I definitely plan to) I was intrigued by the similarities to Ghost Heart. This movie is based on a true story.

Have any of you seen this movie yet? To find out more you can visit their website.