Jeff Tracy:

Ribbon Cutting Speech


People have asked us why Tyler’s Place? Why do we need a sibling care facility? Let me explain a few of the reasons.

Siblings are often confused and get lost in the chaos of their brother or sisters illness. They can feel unloved, frightened or even responsible for what is going on. We often forget how much support they need at this time.

No sibling should ever feel overlooked, uncared for, or abandoned because their brother or sister is hospitalized. Through Tyler's Place, negative feelings can be diffused, and both parents and siblings will be able to maintain and foster healthy family relationships.

Parents can go through a similar set of emotions. Among them are frustration, exhaustion, guilt, sadness, confusion and fear. A feeling of smallness in a world that suddenly becomes too big to cope with – loaded with obstacles that seem impossible to overcome.

No parent should have the additional hurdle of the safekeeping of their other kids piled on top of the mountain of concerns they face at this time.

This is not a place to find a cure or a medical breakthrough. It is a place to find hope, comfort and most of all relief. It is a safe harbor in a storm that rages around the families who will need it the most.

For Kristin and I, our family and all of you, this is also a place to honor a little boy who made quite an impact on us all. It is his PLACE – an acronym which stands for playing, laughing and caring for everyone.

The journey to create Tyler’s Place has been one that we have all made together. It is truly a gift from all of us to the community which it will serve.

I would like to mention a few of the people who have been on the road to today’s ceremony without who’s assistance the trip would have ended a long time ago.

I want to thank David Barry. When Kristin and I first approached David with our idea I don’t think he was too optimistic about it. I do know, however, that he believed in it and that he never gave up on it. It could have ended right there but because he kept it alive and kept pushing, it gained momentum and eventually became what we see today.

I want to thank Donna Sollenberger for believing in this project as well. Donna is a true visionary and champion for family centric care. Her support has pushed Tyler’s Place to the prominence that allows us to honor Tyler’s memory in this remarkable way.

I want to thank Todd and Maria Meister for coming to our support at a time when I was beginning to lose faith in our campaign and our ability to make strides towards fulfilling our commitment. You brought life back into our efforts and reinvigorated our faith and dedication to this project.

I want to thank McKayla, Austin, Collin and Kristin for enduring the many hours of commitment and for continually dredging up the sadness of our loss in an effort to make life less difficult for the families who will benefit from this center.

I want to thank all of our family, all our friends, the friends of UW Hospitals and Clinics, the dedicated people from the UW Foundation and all our donors and supporters. This has been a group effort. The sum of the parts is what makes this whole. This gift is truly from all of us.

St Augustine Wrote – “Faith is to believe in what you cannot see.

The reward for faith is to see what you believe in.”

Thank you all for keeping the faith with us.

Tyler Tracy Benefit Brunch

Good morning,

I would like to begin by saying thank you to a few of the many people who have made today’s benefit possible.

Pastor Schaub
Rog and Sharon Severson
The members of the Visioning Committee
Julie Schmidt
Rose Holerud
Liz and Kevin Scharra
Tina Quale
Brent Corrigan (Happy Birthday Brent)

All the volunteers, cooks, servers, and members of First Lutheran who have helped, I would also like to thank all the members of the community who have donated time, food or items for the auction. Peg Zaemisch, for her beautiful article. Friends, family, and Tyler’s team of caregivers, therapists, and physicians who all continue to support us - many of who join us today.

Curtis Grant said, “Having the world’s best idea will do you no good unless you act upon it. People who want milk shouldn’t sit on a stool in the middle of a field in the hopes that a cow will back up to them.”

Not so long ago Kristin and I had an idea. It started, really, as a need, a concern, and kind of a problem. We found ourselves, quite unexpectedly; in a position we did not know quite how to deal with. From the time of Tyler’s birth to several other periods in his short life, we needed to spend most of our time staying at the hospital. Often we did more than that, sleeping, eating showering and living there for days at a time.

Not being with him, in our minds, was not an option. His disorder was so rare that we often played a large and important role in participating with his healthcare. Educating the doctors and nurses as much as they educated us. It was truly important that we were there as much as possible. We accomplished this by taking shifts that rotated between home, hospital and work for me. Our dilemma, besides the physical and emotional stress caused by living this way, was that we had two other young children who needed us, and as much as we needed them at this time, they needed to be taken to, and picked up from, pre-school, dance class, and soccer practice. They needed supervision, somebody to look after them while we moved through our upside-down lives trying to cope and care for our sweet Tyler.

We relied on the kindness of neighbors and on the loving assistance of family and friends to keep things together and watch Austin and McKayla. This was not an easy thing to accomplish. Everybody has their own busy lives and schedules with all their own special needs. Many times we had asked the hospitals if they had some way of providing us with some kind of childcare assistance. At both St. Mary’s and the UW hospital we were surprised to learn that there was no formal program in place to address our needs.

In the weeks that we lived in the hospital we met other families who, like us, were trying to cope with their own sick child while attempting to balance the needs of the rest of their families. Even before Tyler passed away we had decided that we wanted to do something to raise awareness of the need and work toward a solution. We knew of the Ronald McDonald House but we also knew that it did not fill the need for a day-care type environment. Someplace where your children, brothers and sisters of a sick sibling, can go while you spend the important, and necessary, time a parent needs to spend talking to the doctors, nurses and praying by their child’s bed. Most of the time a hospital room with tubes, leads, machines, and IV poles is not the place for healthy little ones to find mischief.

After Tyler passed away we knew what we wanted to do. We contacted the hospital and met with its directors to discuss our plan. With the UW building its new American Family Children’s hospital, breaking ground this year, we hoped we could influence them to incorporate a sibling care center into their plans. After several months of discussion and persuasion it now seems that our dream will be realized. They have actually started a sibling care program already and the architectural plans for the new hospital have a small space tentatively set aside for a supervised sibling care center.

This is where we are at today. In the months and years to come, we hope to raise enough money to fund that center. We can think of no greater way to remember our sweet baby Tyler, than to honor him with something that will bring joy and at least a little bit of relief and comfort to others who have enough stress to deal with in their sick child.

In order to do that we hope to raise 150 to 200 thousand dollars over the next four years, today’s event is part of that journey. Today is a great day. It is a great victory, in that the success of ´”Tyler’s Place” will be the sum of many smaller victories like todays. We know that it will not be easy to make this happen. We did not set out to do this because it would be easy, or because it would be hard, but because of the overwhelming sense we have of taking the gift of courage and purpose that Tyler gave to us and directing it into something as beautiful as he was.

Ultimately we would like to see a “Tyler’s Place” in every Children’s Hospital in America. We have faith that we have begun building the first one right here, today.

Saint Augustine wrote:

“Faith is to believe what we do not see; the reward of faith is to see what we believe.”

Thank you all again and god bless.

Dr. Mahoney’s Speech

My name is Joseph Mahoney. I am a pediatrician at Group Health (GHC).

I have known the Tracy’s for a year and a half now. During this time, their family has impressed me with their values of family, advocacy, education and respect. I see how these values are being infused into the Tyler Tracy Foundation.

I would first like to talk about their sense of family. I first met Tyler and his family in November of 2002. The family wanted to meet me, as I was going to be covering for Tyler’s regular doctor, who was going on an extended leave. When I walked in the room, the whole family was there – Jeff, Kristen, McKayla, Austin, and Tyler. It was evident even then that family was important and that Tyler was a critical part of McKayla and Austin’s lives. This showed in the way that McKayla and Austin always treated Tyler as their little brother, just like any other brother. The whole family showed their dedication to each other by all getting their flu shot that day to do as much for Tyler’s health as possible. In the times that Tyler was hospitalized, it was common for the whole family to be there.

The second value that has impressed me is their advocacy. Kristin and Jeff relentlessly did what they could to make Tyler’s life better. After Tyler’s first hospitalization, he took some step backwards. The parents and I decided to avoid exposing Tyler to any more illnesses, so we minimalized office visits by having home nurses measure his height and weight and give immunizations. We kept him pretty much illness free for about 8 months. He made great improvements and was learning milestones that nobody thought he could. He was rolling, talking and becoming stronger.

Another example of their advocacy came with Tyler’s special formula, Ketocal. This past summer, the family learned that Ketocal was losing its FDA approval. I knew how crucial this formula is for certain children like Tyler. But I though what could you do? The FDA is a large bureaucratic organization. Well the Tracy’s didn’t even blink. They immediately did everything they could. They got the media involved. They contacted their state legislators. They put pressure on the FDA to give them legal exemption. They found pharmacies in Canada that would continue to sell it. They spoke with their insurance agency to get it covered. They found cans of this formula at other children’s hospitals in the region. All the time letting other families who has children on Ketocal know of their progress.

The Tracy’s also showed their advocacy during Tyler’s last hospitalization. By now the parents were invaluable resources for his care. They were able to not only talk about Tyler’s disease, but they were essential in his care making decisions, and in fact none were being made without the input of the Tracy’s, which is an impressive feat for two parents to have as much valued input about a rare and complicated disease as the physicians.

The Tracy’s have also been great educators. Tyler is one of those rare children we learn about briefly in our training, but will probably never see, and the information about it gets forgotten. Jeff and Kristin were great with understanding this and taught me a lot about Tyler. The parents even came to meet me before I was even going to cover for their regular doctor. They wanted me to know how Tyler was when he was healthy, so if they came in when he was sick, I would understand the difference. They also displayed great pride in his accomplishments. Repeatedly they had to teach countless other healthcare workers when Tyler was hospitalized, and they did so effortlessly.

Lastly, Jeff and Kristin have shown great respect. As a healthcare professional, you feel the need to know more than the patient or their family, because that is your training. Having the patients or parents know more than you can be intimidating and make you feel incompetent. The Tracy’s never made anyone feel that way. They were a part of Tyler’s care, and taught people in a very respectful manner. They showed the same respect in helping to make decisions about Tyler’s care in the hospital. The healthcare staff was proud to have such respectful advocates as the Tracy’s.

It was no surprise to me that the Tracy’s wanted to set up a Foundation for Tyler. I knew they would, long before they announced it. I know they will use this foundation and their values of family, advocacy, education, and respect to help further research and care for other children with rare diseases. They will be very successful with this. What did surprise and excite me was their idea to have a sibling room at the Children’s Hospital. From their experiences with Tyler, they feel it is essential for a healthier experience to have a place for siblings to go at certain times. I had firsthand experience of this need. During Tyler’s last admission in the ICU, I visited Tyler a number of times. On one of my days off, I arrived in my street clothes, in jeans and a relaxed shirt, looking nothing like a pediatrician. I got to sit in the room with the parents for a few hours and observe from a family’s viewpoint what things are like without anyone treating them differently, because they didn’t’ know I was a doctor. The experience is chaotic. So many people coming in and out, giving lots of advice and some of it different than others, many different personalities, some visits brief and other long. Meds were being given to Tyler and his equipment being check. In addition, the parents were waiting on different consultants and various lab results.

I don’t know how parents handle this information overload. In addition, the Tracy’s were dedicated to having their children be a part of Tyler’s life. So it was important to them that McKayla and Austin were a part of Tyler’s care as well. Juggling these aspects is hard. When Tyler wasn’t doing well during his last few days, there were definite times, when Jeff and Kristin had to be able to focus 100 percent on what was going on with Tyler, so they could learn and continue to be valuable advocates for Tyler. There were also definite times when McKayla and Austin were totally bored and would have liked to go elsewhere. The sibling room is a great outlet for these situations.

While the idea of the sibling room was a welcomed surprise to me, the fact that the Tracy’s are making it a reality is not. After my experience with the Tracy’s in the ICU, I see this as not just making the experience better, but as being essential for the parents to provide better care for their child. It is another reachable goal that Jeff and Kristin have added to the Tyler Tracy Foundation.

Contact Information

Tyler Tracy Foundation, Inc.

W. 10623 Airport Road
Lodi, WI 53555

Phone: 608-592-1485
Email: jkmatt@charter.net