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Her name is Lilly and her favorite princess is Sleeping Beauty. She sold 364 boxes of Girl Scout cookies. At seven years old, she maintains a busy schedule of school, dance lessons, skiing, sports and traveling. She loves books and is a great reader. She is the expressive, charming daughter of Bryant and Jenny Stiernagle and big sister to Lydia, Erica and Ethan. Lilly is also loyal friend to many and, though she may not realize it at this young age, an inspiring role model to countless others.

Lilly’s parents grew up in South Central Minnesota; Jenny in St. Clair and Bryant in New Richland. They were working in Mankato and wanted to make their home in a neighboring community. In 2000 they found just what they were looking for, a modest ranch-style home with a large back yard in the small community of Easton, 40 minutes south of Mankato.

Jenny was 21 when she and Bryant were married. Starting a family right away was something they both wanted and within the first year of the marriage they were delighted to find out that Jenny was pregnant, “I tried to do everything I could to prepare for pregnancy. I took folic acid, watched my diet and avoided anything I thought would not be good for the baby.”

Twenty weeks into the pregnancy, Jenny and Bryant went for an ultrasound and, though the measurements taken of the baby were somewhat behind where they should have been, Jenny says, “The doctor reassured us that everything was fine and that there was nothing to worry about.” A second ultrasound continued to indicate the baby was small so to be on the safe side, he referred Jenny and Bryant Abbot Northwestern Hospital in Minneapolis for a level 2 ultrasound.

Jenny says, “I was seven months along at that time. In a matter of minutes, the technician turned the machine off and told us she had to go get her supervisor. We asked what was wrong and she told us that the baby was missing part of its legs. She left us alone in the room, completely baffled and distraught.” When the supervisor returned to the room, she told them that it appeared the baby was missing the femur bone in both legs.

While the answers from the ultrasound were not conclusive, Bryant and Jenny left that day knowing that their unborn child was facing some physical challenges. The Stiernagles met with a genetic counselor who gave them a computer printout of the possible diagnosis. Jenny says, “The doctors suggested that I undergo amniocentesis for a clearer genetic diagnosis of the condition. We passed on that knowing that it carried some risk of miscarriage and even though we were just presented with news that we were not prepared for, we still wanted this baby no matter what they outcome was going to be. We realized that we really didn’t need to know at that point. There was already enough to process and we were just looking forward to having the baby.” Though they were shaken by the news, they were able to stand by their decision of not finding out if they were having a girl or a boy.

Over the next few days, Bryant and Jenny shared the news with family, friends and co-workers. Jenny recalls, “I was working at an architectural firm as a drafter. We were all in a meeting and I was given time at the end of the meeting to tell everyone what was going on.” Jenny cried as she spoke with her fellow employees and was grateful to be able to relate the story only once. Sharing such a sensitive, private issue in the workplace can often be difficult but is necessary and healthy for everyone. Co-workers, friends and neighbors immediately rallied their support and showered the young couple with caring gifts of food and cards of encouragement.

In the absence of a definitive diagnosis, the doctors closely monitored the baby. For the rest of the pregnancy Jenny and Bryant had ultrasounds done every two weeks. Jenny smiles as she recalls one ultrasound in particular, “The technician zoomed in on the face looking for any facial conditions that could be associated with the condition. Bryant saw immediately that the baby had my button nose. There was nothing wrong.”

Lilly was delivered at Abbot Northwestern Hospital in Minneapolis at 8:00 p.m. on May 21, 2002. She weighed 6 pounds 4.7 ounces and was 15¼ inches long. Jenny says, “When she was born, there was immediate relief. We saw her and said, ‘This is what we’ve been worrying about? It’s only her legs.’ We knew right away that she was just fine.”

Their intuition proved to be true; there were no other medical complications. Lilly spent an extra day in the hospital so she could be seen by a specialist from the University of Minnesota Hospitals. He was able to identify Lilly’s case as PFFD, proximal femoral focal deficiency, a non-genetic condition known as a sporadic mutation, so rare that there has never even been a scientific study.

“Lilly was a normal, good baby; calm, happy and content. I went back to work and my mom took care of Lilly,” Jenny says. At her three month checkup, the doctors told them that she probably would not walk but Jenny and Bryant thought otherwise, “The way her legs were moving, we couldn’t imagine that she would not progress from crawling to walking.” At 12 months, Lilly was sitting. She crawled and pulled up to standing at 15 months. Lilly took her first steps at 16 months using a walker at pediatric therapy services in Mankato with her physical therapist, and now family friend, Nancy Dobson.

There are several excellent pediatric health care facilities in the region including the Shriners Hospital for Children in Minneapolis. Jenny says, “We had heard about Shriners and have been going there since she was about five months old. They have supplied her with all of the equipment she uses. We love the hospital – it’s so kid friendly. When we go, we try to go as a family so the other kids can enjoy the toys and see the aquarium.”

Lilly first became aware that she was different from other children when she started preschool. She never came out and actually asked, “Why am I like this?” but when Jenny was pregnant with Lydia, Lilly wondered if the baby would have little legs like her. Jenny told her, “That would really be neat but I don’t think that will happen. Your legs are an extra special thing that only you have.”

After two years of preschool as part of a class of only ten children, Lilly was ready for kindergarten. Jenny says, “There were now 21 kids in the class – with only a few she knew from preschool. At kindergarten roundup, when the parents gathered with the teachers and principal, I used the opportunity to introduce myself as Lilly’s mom and explained that she was the one in a wheelchair.” She encouraged the parents to talk to their children on the way home or sometime soon when the event was fresh in their mind and explain to them that they may see her crawling around the classroom, walking with her crutches or pushing her walker. I told them, “She’s just like your children, she just gets around differently.”

Meeting Maya

More than a thousand miles away, Natalie and Ryan Albert had been searching for other parents of children diagnosed with PFFD. Their daughter Maya was born with the condition. Maya has a twin sister and a younger brother. The Texas couple posted a request on a PFFD website hoping to hear from someone. It took two years for Jenny to answer. It only took minutes for Lilly and Maya to form an instant bond of friendship.

The families visit each other twice a year. Maya and Lilly talk on the phone and correspond by mail in between visits. Jenny says, “Lilly knows that she can always call Maya any time. They already know how to support each other.”

On one of their visits to Texas, the local newspaper ran a story about the two little girls and their long distance friendship. People magazine’s Austin, Texas, editor saw the story and contacted them. Jenny says, “We agreed to do the story because it was an excellent way to find other people with PFFD.” The story came out in July, 2008. Jenny continues, “Since the story ran, we have heard from many other people of all ages from all over the country.”

One of the things they are finding is that every case if PFFD is just a little bit different. Jenny explains, “Unilateral is most common, where only one leg is affected and the femur is just slightly shorter, so they can do limb lengthening and other sorts of procedures. But with Lilly and Maya it is called PFFD Class D – meaning worst case scenario – where there is no femur present or just a tiny little nub of a femur. There are no hip sockets so it is cartilage surrounding her tibia, no fibula or femur.” A Circle of Friends

Lilly met 40-year-old Craig Blanchette, a Paralympic medallist when she was attending the Wheelchair Sports and Recreation Camp at the Ironwood Christian Camp in Stewartville, Minnesota. He had attended the camp years ago and came back with his two teenage sons to show them the camp that offers sports activities including archery, basketball, tennis, horseback riding and others. Jenny says, “He pulled me aside and wanted to know more about Lilly and asked me, ‘What is it that she has?’ He had one foot and had one amputated as a child.” When Jenny told him that Lilly had PFFD he replied, “I think that’s what I have. I’ve never met anyone else like me before.”

Lilly and her family have also become close friends with the Olson family: Kirk, Sara and son Gavin, 2½ , from Canton, Michgan. They connected and emailed through the PFFD website at first, then talked on the phone after the People magazine article about Maya and Lilly came out. Sara, 35, also has Class D PFFD and is a former motivational speaker and preschool director who is now a stay at home mom like Jenny. The families met in person last fall in Chicago. Since that time, the Olsons have travelled to Minnesota and the Stiernagles are planning a trip to Michigan in July.

“Our families have so much in common and we are happy to have met them.” Sara offers Jenny valuable encouragement and parenting insights about living with PFFD. Jenny says, “She told me, ‘Please tell Lilly that I did swimming lessons when I was a kid. My favorite thing to do, once I had the nerve, was jump off the diving board. But, more importantly I loved to do handstands in the shallow end, once I learned to hold my breath and how not to float back up!’”

“Sheila McLaughlin is another amazing woman we have emailed often and talked to on the phone. She has been married to Charlie for 30 years and they have a son who is 24.” Sheila was thrilled to hear back from the family when she contacted them after reading the story in People. Sheila and Lilly share many similarities including the original diagnosis of femoral hypoplasia – unusual facies syndrome. She wrote this in an email to Jenny, “My favorite saying is that ‘With God nothing is impossible’ and I do believe that with the love and support it is obvious that you give to Lilly and to all your children, she will be just fine. Yes, God does make special children to give to special parents – you are special, you are strong and she is blessed to have you! There really is not anything Lilly cannot do if she wants to – you will always figure out a way.”

Jenny continues, “These are just a sampling of the supportive people who have reached out to us since the article in People came out. We are so appreciative.” Everyone’s condition may be a bit different but all are grateful for the opportunity to share information and experiences. Such a rare condition can be so isolating – the Stiernagles realize that their family, especially Lilly, will benefit from these relationships.

Questions and Curiosity

Lilly’s condition often draws attention, stares and questions from other children and she handles their curiosity in her usual matter-of-fact fashion. Jenny wisely keeps her distance, “Whenever we go into a situation with Lilly, like on a playground, I try to stay in the background and let the kids work it out. Most of the time, the kids are satisfied with her explanation. Once in awhile, I have to intervene and re-direct the attention away from Lilly.”

As a parent, Jenny tries not to worry about what other people think, say or do, “Otherwise we end up missing out on experiences and events. It’s life, people are going to be curious – everyone looks, but not out of malice. I can’t make myself or Lilly miserable by assuming the worst of people’s intentions. When we get looks, we think they are looking because we are a big family with four kids so close in age they are often being mistaken for triplet girls or twins, not because one of our children looks different from the others or is using a wheelchair.”

Jenny believes that if parents seem bothered by things people do or say, the children may learn to react to it that way. She says, “If we lead by example and don’t get upset or annoyed, but rather be upfront and helpful, we teach them about Lilly and others with differences. We follow up with similarities they may have with her and see they learn to do the same. So far this has worked great for us as I cannot remember any bad experiences we have had.”

This summer Lilly will again take swimming lessons, even though she doesn’t like to put her head under water, and enjoy her favorite activity, horseback riding. There are plans for a new play house in the back yard. She may be small in stature, but Lilly will never let that stop her from living life to the fullest. She proves that by giggling and executing a perfect handstand.