Sheri and HubbyName: Sheri Coil

Birthday: December 10

Location: Napa Valley, California USA

Children with EB: Corey, 6.5 years old, Alex, 5.5 years old and Brandi, 4.5 years old. All have RDEB (Recessive Dystrophic Epidermolysis Bullosa) Hallopeau-Siemens subtype.

Biography... in her own words:
I suppose that when one writes a biography of ones self, one probably should start at the beginning. But I am not sure where my beginnings are… My physical beginning put me into the category of a Baby Boomer, the very first of them. I was born in the San Francisco Bay Area to a banker and a firefighter. Which leads to the ancestry that molded me. Mom’s family was in the US since the 1600’s, mostly in the NY area. Her mom was a college grad and concert quality pianist. She was also a Vogue model in the late 1800’s. Great Grandmother was a lawyer and was owner and CEO of a rock quarry that supplied the rock for the upkeep of the Erie Canal. A book could be written about her. She was considered a black sheep in her day. Each of these women had one female child and only my grandmother had a son (who was 23 years older than my Mom) who was a very successful entrepreneur in SF and who also had only one female child. A family of women! And all achievers. (I might add here that my only biological daughter has accounting and law degrees.) So I can’t figure out what happened to me! The farm girl at heart! My Daddy, the firefighter, had a dad who was a fire fighter in San Francisco in 1906. His sister married a firefighter and they produced another firefighter. And you will never guess what my husband does! Dad’s family was pioneers in places like Missouri, Colorado and California.

So I was born. I was raised mostly in San Francisco by a mostly single Mom. She was first and foremost a businesswoman who enjoyed life. Then she was a mom. When I became an adult, she became my best friend. When I had kids, she became the world’s best grandma. She passed away from lung cancer in her early 60’s. My Dad was a very involved one. He told me the facts of life and took me camping, to the circus, on vacations to visit grandma and grandpa and the beach they had on the Russian River and arranged swimming lessons and summer camp. He loved to interact with kids and had a marvelous sense of humor

I was a totally horse crazy kid from the cradle. Dad would take me to the pony rides every Sunday afternoon. When I was nine, I discovered the stables of San Francisco. I became an instant barn mouse. I believe I had an umbilical cord to the horses. I was able to access horses of every shape and type. Harness horses, polo ponies, hightails, hacks, police horses, jumpers, the list goes on. What a broad education for a girl in love with horses. Mom bought me my own horse – a mare I named Marizydoats, but we called Mumzy as she had a filly that was named Mermaid’s Flirtation. Later a mare we owned had a stud colt we named Ali Baba. He was a mischievous critter who could make any tool my husband was working with disappear if he could just get his teeth on it. I, to this day, have a picture in my mind's eye of Lee chasing that horse all across the fields trying to get a hammer back before Babbie hid it. Those two offspring had a foal we named Sailor’s Regret. We still have him, although he is pure pasture decoration.

I did manage to get through High School even with the total absorption in horses. And after the age of 16 – boys! I met this sailor one night after my girl friend and I had been riding late and had stopped into the café at Playland at the Beach. Told him I was NOT going to go anywhere with him that time of night, but if he was really serious about getting to know me, as a real person, he could meet me at the same place the next morning. He did! We had one date and he went on a cruise for two months. I never went out on one date the whole time he was gone. Me, the girl who went out every night of the week before! Talk about your basic "Love at first sight" syndrome – this was it! We talked for one month straight. About everything: future goals, how many kids we wanted (a dozen and at least one of those a special needs adopted child), beliefs, ambitions… We met in February, talked in April, got engaged in May, I graduated in June, and we got married in August of 1964. I was 17, he was 20. The day after we got married, he went on a 9 month cruise to Viet Nam. When he got back, we started our family and had a church wedding. He went on another cruise and left on my birthday, just before Christmas and I was 7 months along. Nine months later, he was home and out of the Navy. Our son was about 6 months old before he and good ole Dad met. The next year we had a daughter. This is the point that we decided that maybe the dream of 12 kids was just that. Two was all we could really afford.

We bought a home in the country where we could have our horses and raise dogs. We showed the dogs and horses and finally decided to get a bigger place and build a kennel and stable. The month we opened our boarding, grooming and training kennel, the lid flew off gas prices and it went on rationing so no one was traveling. The county decided we could no longer live in the very nice mobile home we had and we moved into the garage. We chugged along for a few years and finally got out of business and bought another house in the country. By this time we had sunk so much into the business, that we couldn’t afford much of a place. We found this big house that had been mistreated and abused and bought it for a song. Spent the next 18 years trying to make it livable.

I went to work for the school district and did a lot of special work with special kids and families. Decided to go back to college and got my degree in art. I actually took college classes with my daughter. Illustrated books for a woman who was a Dr. in early ed and got immersed in hobby ceramics. Got a teaching certificate in that and opened a shop. Then we decided to get some sheep. A book told us that if we really wanted to learn about fiber sheep to find a spinner’s group and learn to spin. Well this was right up this earth mother’s alley. I was so into fiber stuff anyhow. Had taken many years of tailoring and pattern drafting, dressmaking and machine embroidery classes. I had developed a fascination for weaving and spinning when I was a teen. Now I had the chance to learn.

It was during this era that we began to realize our dreams of a big family. We started fostering children. All of the kids in the neighborhood were always at our house, anyhow, so why not take some more in. We started with teens. Burned out on them after a few years and our kids were graduated from high school anyhow. Then we got to thinking that we would maybe foster one baby at a time. We could realize our long time dream and travel some with a baby and wouldn’t have the teenage emotional baggage to deal with… Soon we were taking care of medically fragile infants. And there was such a need for parents to do these babies that we upped our license to two and then three and finally topped out at the legal limit of 6. We would have 6 infants at a time. I loved it. Babies were my destiny! I had told my Kindergarten teacher that I was going to grow up, get married and have children. We have fostered over 50 babies over the years. Some went and some stayed. We adopted two of them. Then kept three siblings with Epidermolysis Bullosa. And our son and his wife adopted one of our babies.

We bought the property we live on now and built a new house that was designed to care for the children. I designed it and Poppy and our son, Darwin, built it. We picked out and bought every little fixture and stick of furniture in this house. It was a real experience. This was the realization of another dream we had carried with us from those early talks. There is a hundred + year old hay barn on the property and we built a big shop building. We live in a beautiful canyon in one of the loveliest areas on earth. Unfortunately, we also live on one of the busiest two lane highways on earth too!

Our house is, by necessity, a big house. We added a granny unit onto the house for our son and daughter-in-law and their kids. (She helps with the kids) We were in the process of vendorizing with the Regional Centers of California to care for their clients. So, we now care for children who are differently abled in addition to being medically fragile! We have six in wheelchairs most of the time. Most houses with kids hear "Pick up your toys!!" A lot. We do too, but also, "pick up your wheelchairs, we can’t even walk through this jungle!!"

We have some room for the animals. Our sheep population is over a hundred now and we have a dozen Pinzgaur cattle to boot. Not to mention the goats. Angora, Nubian and now Poppy’s newest venture, Boers. Two Louisiana Catahoula Leopard Dogs and too many to count cats, bunnies and one goose who really believes she is a sheep. Also one horse and one pony. It is a wonderful place for kids to grow up.

"Poppy" and I (Nana) now have five grandkids (in the granny unit!) and our eight. Plus there are always extra kids floating around. Most of the kids attend a neighboring country school. It is a small school that is mostly farm type families and is up to date technology wise. Also mainstreams lots of kids. It has an excellent full inclusion program. I, of course, am on site council and PTA. The kids do a lot of community things. Our two ten year olds and eleven-year-old granddaughter have taken dance for 6 plus years now. They do theater, too.

Life with EB:
Our three kids with Epidermolysis Bullosa have been both a joy and a challenge and one of the most rewarding experiences in our lives. One of those things where you can really feel you have made some difference in a child’s life.

One day a bit over five and a half years ago, we received a phone call from the child protective services of a neighboring county. They said they knew we liked challenging kids and that they had had two little boys with a very rare disease that caused their skin to blister and slough off. The parents were living in a car and were incapable of caring for them. They were hospitalized in Packard Children’s Hospital at Stanford for would management. We said sure.

Corey was the oldest at 14 months. He had an absence of skin over 75 to 80% of his body. He had been born with no skin from his thighs down. His toes were completely webbed over and his hands were right behind, fingertips were already encroaching his palms. He was a mass of infection, about every one in the books. He was microstomatic already from scarring and his tongue was adhered to the floor of his mouth. On the way home from Stanford the day we picked him up, he threw up. And continued to throw up... For three days he had diarrhea and tossed every thing that went down. Now this is bad enough, but, with a child who is wrapped head to toe in bandages, it can be disastrous. He was no sooner cleaned all up and rewrapped than he was dirtying himself again. Finally on the third day, he dehydrated on us. The local hospital was scared silly of him. In five hours the ER doctor could not find a single person who would place an IV in him. By this time his veins are nearing nonexistence (as was he!) and the doctor got kind of angry and just placed it in Corey’s jugular vein. They transported him via ambulance to Stanford where he stayed a bit longer! At 18 months, Corey was doing so well that the hand surgeon performed hand surgery (syndactally release) on his left hand. A five hour operation that was a complete success. We retrieved the other hand with aggressive and creative bandaging.

Alex was five weeks when he came to us. He weighed less than five pounds. He had been induced at 32 weeks as he had IUGR (intrauterine growth retardation) and was literally dying in utero. This had been discovered at his only prenatal visit. He was so teensy and such a mass of blisters. He was released a few days earlier than Corey. On the way home from the hospital, I noticed that he had what looked like a huge piece of liver in his mouth. It was a blister and when it burst, it drained huge amounts of blood all over the place. Talk about a fun introduction into life in the eblane. He had pneumonia within a week. One day I noticed that his little toe was sticking straight out to the side. I was petrified, thought that his toe was broken, but it wasn’t. It, the whole toe, was a blister. And the bone slid right out of the flesh it was lying under the toe next to it. Of course it is a Saturday!!! And no one was anywhere to advise us. We went to our pediatrician’s office. The nurse freaked out when she saw it. The doctor comes in, takes a look and says what’s the problem? We all look and sure enough, the toe is where it belongs. (Is this Murphy’s Law or what?) We had lots of these fun experiences. They tend to keep you on your toes.

What Stanford, the social workers, etc. failed to tell us was that the two boys were not expected to live. Every one thought the other had done it. So we treated them like they were going to live. And they certainly have. In three months Corey was having serious surgery and Alex was described as "robust" on his clinic report!

About this time the biological mom tells us that she is pregnant again. Now, the chances of a child being born with this form of recessive disease are pretty low. Only one in maybe every 30,000 carries it and then it takes two together. And on top of that there is only a one in four chance with each birth that one will be born with the disease. What are the chances of this one in four happening a third time in a row! But I just knew that this baby was EB, was a girl and was ours. Some deep intuition, I don’t know what it was. I never had any doubt about it. She is, she is, and most definitely she is! When she was born, the neonatal nurse in attendance was the same nurse who had been our home nurse with the boys and who had become a dear friend. She was able to tell the doctor’s in attendance what was with her and proper care. She told us that one could just stand and watch the blisters popping out on her. They moved her to a children’s hospital that knew nothing about EB. Why not Stanford, I will never understand. She was there two weeks while dss decided where she would go. When we got the word that she was ours we ran to the hospital and she was a mess. Blisters all over her body. Her hands were wrapped in boxing gloves and her body was unwrapped. Both were covered in lesions. I spent three hours doing training on EB care for the staff, got Brandi wrapped correctly, and the doctor in charge released her to us the next morning. We continued to wrap her the ABC way and got her healed up in two weeks. She is our shining example of what the wrap from birth can do. At age four, she is in amazing condition. The minute she is not wrapped, instant blisters, but wrapped… clear. Most important is that she is our bright and shining little starlet. Or as she describes herself " I was borned a baby princess"

For eight years I have been involved with Head Start. I have been treasurer and Chair (three times/years) on the policy council. Worked on in house reviews and all the committees. I have had five kids and four grandkids in Head Start and believe in it wholeheartedly. My kids have been fully included in a classroom that worked in collaboration with the local early intervention group. When they needed a council member to be a representative on the grantee board, I volunteered. I thought it would be interesting. It was so interesting that when my time on the Head Start PC ended, I stayed on with the grantee non-profit agency, serving on it’s board, fiscal, personnel and policy committees. This agency runs the local food bank, senior dining club (meals on wheels), emergency shelters, a halfway house, child care, infant care, Head Start, Nonsmoking council, and highly successful new program that is a support group for our local Latino population. I really enjoy being able to serve on this board. This is my fifth year. It is a good feeling knowing that I can help so many of our most vulnerable population this way. I even (a little brag here) received a community service award a couple years ago. (Maybe another little brag here) When our daughter went off to law school, she was going to become this fancy corporate lawyer. During her time there, she found a passion for public interest law and helping needy people in the courtroom. She has been a volunteer for years, angel tree managing, soup kitchens, reading with kids, etc. So it does not surprise me, just makes me very proud – Mommma’s girl!) (She really is Daddy’s Girl!)

My current passion is the EBmommas support group list and web site. Melanie, Silvia and I are so concerned about reaching out to all the families with EB and bringing them together to provide support and to educate each other on EB. The web site is growing every day. The list is growing too. We are bringing new families into the fold constantly. It has become the warm and fuzzy place we envisioned it to be after some growing pains and learning lessons. It is supportive, informative, fun, emotional, chatty, sharing and caring. A family.

Lee and I have been married for 35 years now (August 2, 1999). He has retired (which he says means tired over and over again) from the fire department and helps with the kids full time, when he isn’t outside playing shepherd to my sheep and cowboy to his cattle, and farmer to the land, and all his other chores.

We, Poppy and Nana, as we are known as, have realized so many of our dreams. We have our twelve kids - and more, the older kids who grew up to be wonderful adults to be proud of, five beautiful grandchildren, a home we built ourselves to fit us and our very different needs, living in the country, making a difference in a child’s life, adopting more than one very special child, still being together and still very much in love, we have our faith (which is important to us). We have so much to be thankful for. We are truly blessed.

Unfortunately Sheri passed away on October 29, 2000.

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