October 19th, 2009 by admin
October 8, 2009, Piedmont, CA
Two of Lynn Anderson’s natural born children carried a rare genetic disease — epidermolysis bullosa (EB) — which prevents a child’s skin from growing with their body. After thirty years of nursing her children and grieving their deaths, Lynn founded an organization that raised money for EB research at Stanford University. Lynn now rejoices in a newly-approved treatment that will save the lives of many EB children.
You had two children who suffered from epidermolysis bullosa. Chuck passed away in 1988 at age 27, and Christine in 1993 at 14. What is EB?
The term epidermolysis bullosa essentially means “skin blistering.” There are several forms of the disease. Christine and Chuck suffered from one of the two lethal forms. Because of a genetic defect, the protein that connects the two layers of skin was missing. You can think of it as having no “glue” to hold the skin together which resulted in the skin tearing or blistering with the slightest provocation.
Their skin was so fragile that lifting them under their arms as a baby completely removed the skin. Pants rubbing on knees and the pressure of shoes caused blisters or sores. Simple activities such as walking, bathing, or even enthusiastic hugs would tear the skin. Blistering and scarring also occurred in the mouth and esophagus. Sometimes they couldn’t open their eyes for days because the rapid eye movement of sleep had caused lesions on the eyes.
Baths were the hardest part of their lives. If you have had a cut finger, and know the sting of putting it in water, you can imagine the excruciating pain of climbing into a bathtub when most of your body is an open wound. The old bandages had to be soaked off because they often stuck to some of the sores. A whirlpool bath of Clorox water was then used to cleanse the wounds. Because towels caused too much friction, we used a blow dryer to dry the skin. The wounds were then covered with antibiotics and non-stick bandages. The final layer, a soft gauze wrap, covered them from neck to toes. This process took about three hours and left them totally exhausted.
One of the most disabling effects of EB was the scarring that occurred between the fingers which caused severe deformities. Chuck’s hands were surgically corrected to free the fingers. The surgeon cut around the wrist and actually removed the whole outer layer of skin just like a plastic glove. He then would wrap the fingers and splint them while new skin grew. This painful process went on for ten summers before Chuck decided he just didn’t want to do it anymore.
Because most of their calories were used for healing, Christine and Chuck were also plagued with chronic anemia and growth retardation. At their healthiest, they weighed no more than 80 pounds. The worst effect of EB was the pain. During the last years of their lives, 70 to 80% of their bodies were covered with angry wounds much like burns, only their wounds never healed. They never knew a day without pain.
What kind of quality of life did your children have?
In spite of their suffering, Chuck and Christine were amazing in their ability to find meaning and joy in their lives. They loved their brothers and sisters who were helpful and loving. I don’t remember a time when Christine or Chuck was angry or bitter towards God or felt hateful about their lives. At times I would look at their wounded bodies and think, “If I had to live with this, I would throw myself off the Golden Gate Bridge tomorrow!” At one time I asked Chuck how hard was to live with EB, and he answered “I don’t really know because it is all I have ever known.”
Chuck was particularly gregarious and had an amazing self image for a young man
plagued with EB. When I think of heroes, he is truly one of mine. We lived in an
affluent community where the high school students were pretty sophisticated. Chuck was
so much his own person that he wore overalls to school because they didn’t rub his waist.
Add snap-closing shirts (buttons were too hard for him), tennis shoes, and a cowboy
hat. You get the picture! He had a remarkable ability to draw people to him and
made friends throughout the community.
Chuck would “hang out” at the police station where they eventually invited him to ride in
the police helicopter. He regularly rode the Goodyear blimp when it was in town and
often sat in the control tower at the Oakland airport watching the airplanes come and go.
From age 16 until 22, as “Honest Chuck,” he co-hosted a game show on San Francisco’s
most popular radio station.
Christine had a harder time being “different.” One of my most vivid and lingering
memories involved the morning drop off at school. She would wince in pain getting in
and out of the car, but once on the school sidewalk, she would put a smile on her face,
force herself to stand tall and walk as though no hurtful wounds hid beneath her
bandages—amazing courage for one so young. She was the essence of sweetness. Her
bedtime routine required about 30 minutes to deliver medications and hook up her
feeding tube. She would often say, “I’m so sorry you have to do this when you are tired,
Mom.” Imagine! Chris and Chuck were an inspiration to our family and to all who knew
Near the end of their lives, when life became void of any quality, both Chris and Chuck reached a point where they really didn’t want to live anymore. They were ready to move on. Both died within two weeks. I have always believed that God knew their desires and, in His love and mercy, took them when they were ready to go.
What were some of the spiritual lessons you took away from your experience with these children?
In many ways, my experience with Chuck and Christine was a spiritual journey from the beginning. My belief in the hereafter was the only way I could accept their having this horrendous disease. That belief also sustained them. If I had thought this life was all there was for them, I think I would have been bitter, angry and frustrated toward God at the unfairness of it all. I also learned that God does give us with strength when we face difficult challenges.
When Chuck was born, I knew nothing about the disease. The disappointments came in small steps as the disease progressed and more symptoms became evident. After our second son, Cory, was born healthy, we arranged for genetic counseling and learned that our chances were one in four of having an EB child with each pregnancy. We decided not to have more natural children and were blessed with the adoption of two girls.
We were looking for another adoption when I found myself unexpectedly pregnant with Christine. Gary was a bishop at the time and, being the optimist that I am, I believed this pregnancy was an answer to my prayers. The baby would be healthy because Gary was working so hard as a bishop. When Christine was born with EB, I was totally unprepared and overwhelmed with despair. The whole map of this awful disease lay before me, and I felt horribly guilty for bringing such suffering to this child. I truly felt abandoned by God. It was a real crisis time for me. Fortunately, that feeling was short-lived because I needed my Heavenly Father more than ever before.
I felt such grief that there was a heaviness that was actually a pain in my chest. It was Christmas time when we brought Christine home. As we walked down the stairs to our house, I could see could see my mom through the window playing with our other children and I thought, “I will probably never be entirely happy again, but I’ve got to summon the strength to make life normal.” I didn’t want the children to know how absolutely devastated and heartbroken I felt about Christine’s future.
I protected myself by going to the grocery at night when women with healthy babies would not be there. I rarely went anywhere but to church and left early so that people could not show their sympathy, fearing I would burst into tears. Isolating myself in our home was comforting, though not healthy.
Christine was about 9 months old when I was blessed with an insight at a testimony meeting. A woman spoke about issues that were difficult for her. I felt a kindling in my heart for this woman and baked cookies for her that afternoon. It was so healing to get out of myself and my own problems. I look back now and wonder why it took me so long to plug into the message of the gospel: that we will find ourselves in serving others. For a while service was my therapy. If I was having a bad day, I would bake cookies for someone. Within a very short time, my grief totally left me. I felt free of despair and truly happy again.
Actually, I think life with Christine and Chuck was a spiritual journey for all of our family. Not one of us could have accepted the sadness of their lives had we not known there was a life beyond mortality where they would enjoy bodies free from pain. Because of Christine and Chuck, we learned about sensitivity and compassion. My heart still swells when I think about the kindness, service and love given to them by their siblings.
My spirituality was also strengthened by seeing so much goodness in others. So many people lovingly embraced our children and generously supported the work of our foundation. For that we felt tremendously grateful. Gratitude, too, brings healing.
Would you describe how you started the EB Medical Research Foundation?
In the late 1980’s Stanford recruited Dr. Eugene Bauer to head the department of dermatology. He was deeply committed to EB research. Because of his stature in the medical research community, he was able recruit other top dermatologists, and almost overnight,, Stanford’s dermatology program became one of the best in the country. In 1990, Dr. Bauer contacted Gary and me about starting a foundation. He believed his team was making progress that might lead to a genetic treatment for EB patients.
Being an unknown person representing an unknown disease seemed an enormous challenge, but with the help of friends who provided time and professional skills, the foundation was started. Fortunately, Steve Young came on board early as our spokesperson. We began very slowly, though I remember feeling quite jubilant that first year when we raised a whopping $25,000! We have always been a “kitchen table” type of organization with no paid positions and have kept it volunteer so that nearly all contributions can go to research instead of overhead.
Our first major breakthrough came with the support of Nu Skin Enterprises—truly a company with a heart! I went to the leaders of Nu Skin in part because I knew the leadership was LDS, and because I thought it would be great for a company called Nu Skin to provide “new skin” for children who desperately needed it. In 1996, Nu Skin committed a 10 million dollar grant to be distributed over a nine year period of time directly to the Stanford Department of Dermatology for EB research. In addition, they have given and continue to give generous gifts to our Foundation each year. Nu Skin has also helped develop public awareness of EB through their conventions and the development of a beautiful video through their media department. They have truly been our partners in the fight for a cure for EB. Without Nu Skin support, the research would not be where it is today.
The foundation has become a huge presence in Hollywood, with Brad Pitt and Courtney Cox on your board and Oprah dedicating a feature spot on her show to EB children. How did you get this kind of exposure?
A few years ago, Gary and I came to the conclusion that the Foundation would die with us if we didn’t find someone to help in its leadership. We were fortunate to find the Joseph family who had the needed skills and motivation. Andrea and Paul had an EB baby and were anxious to help move EB research forward. They opened a second office in Los Angeles. Fortunately, they have connections with the entertainment community which has been extremely helpful in spreading the message of EB and in raising research funds. We’ve gone to new heights with their help.
How close is the research to finding a cure for EB?
When we started the Foundation, I didn’t think we would live to see the day when a cure was possible. We had participated in so many experimental programs that came to nothing. I am thrilled to tell you about our great news! After 22 years of research, Stanford received FDA approval for a gene-therapy treatment for EB patients with the form of EB that took the lives of Christine and Chuck. Human trials should begin sometime during 2010. This has been the focus of our prayers, our time, and our efforts for so many years. Gary and I feel tremendous gratitude for the gifted scientists who have been so committed, dedicated and prayerful in their research of EB. We have gotten to know them well, and respect and love them dearly.
Would you describe the treatment?
It’s a complicated and it isn’t our ultimate hope, but essentially they take the EB child’s skin and they grow it in a lab dish. You can’t graft donor skin to people, it never works. So you have to start with the patient’s own skin. Then the doctors use a vector, which is a virus that has been cleaned out, to take the healthy cells throughout the body. The hard thing was getting the healthy tissue into the stem cells because skin sloughs off about every 3 months so the correction is lost, but the doctors now have the correction in the stem cells where it’s permanent. It’s not a cure-all, but if you take a new baby and graft all their pressure points, they’re going to have a relatively healthy life. This treatment would have saved my children’s lives and prevented them from having the pain and the side effects they had.
Because of Stanford’s willingness to share their research every step of they way –instead of protect it like many universities do until they have the cure — their knowledge inspired research programs all over the world. It’s a day of gratitude and great blessings for me.
Do you feel that being Chuck and Christine’s mom has been your calling in life?
I don’t believe God foreordained me to be the mother of EB children, but it certainly became one of my callings. I also don’t believe God intended for Chuck and Christine to have EB. I think it was an accident of nature, the result of the genes that Gary and I carry—one of the risks that all of us face in mortality. Our growth comes from accepting and trying to overcome that which comes to us. I think that God (and possibly Chuck and Christine) knew that they were coming to bodies that were not perfect. Though He didn’t provide the miraculous instant cure for which I prayed, He was with our family. He was our loving partner, weeping when we wept and giving strength when we most needed it. The recent research success has been a tremendous blessing. It is a great comfort to know Chuck and Christine’s suffering came to something good.
God was with me and with these children. He was my partner in this, weeping with me when I was weeping and buoyed me up when I needed it. With the miracle of this new treatment, I feel like my children’s suffering has come to useful end. That is a real comfort to me.
At A Glance
Location: Piedmont, CA
Marital status: Married 49 years
Children: Five (45, 39, 37 and two deceased)
Occupation: President, EB Medical Foundation
Schools Attended: Brigham Young University, Boston University, San Francisco State University
Languages Spoken at Home: English
Favorite Hymn: “Because I Have Been Given Much”
Current Church Calling: Ward Activities/Fellowship Committee
On the Web: Learn about Lynn’s EB Medical Research Foundation at www.ebkids.org
Interview by Neylan McBaine. Photos used with permission.
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