The story of Sam's house begins with a baby being born in southern Utah with Caudal Regression Syndrome and Dextrocardia. The condition targets the bones causing the sacrum, the lowest part of the spine, to not form normally or at all. In addition, the heart is flipped onto the right side instead of the left. Many have issues with their arteries, the ventricles of the heart being inverted or other heart defects. It can also result in other organ disorders, such as the kidneys being malformed with one missing or them being fused together.

Despite his multiple health problems, Sam was determined to be as “normal” as possible. Even with the setbacks of having to travel back and forth between Cedar City and Salt Lake City to visit Primary Children's Hospital, he kept his infectious smile and endeared the masses to him.

His personality created many friendships. Friends would push him in his wheelchair when they saw him coming down the road on his own. He also was granted a license to go hunting and shoot from the truck. He felt fortunate to get his buck, which made everyone excited and proud.

With the help of his dad, he excelled in the scouting program. At age 14 he achieved the rank of Eagle Scout.
He passed away two weeks later.

The entire community was moved by the greatness of Sam's spirit. He was determined to make a difference in the world… and he did. With the help of his amazing parents and siblings, he overcame some of the greatest obstacles. He truly influenced his community in countless ways.
The concern is not that people may forget Sam, but that they forget the hundreds of others going through extreme physical, emotional, and spiritual challenges. Is there not some relief for those families?

Jody had the privilege of knowing Sam. After moving from Cedar City, he volunteered at Primary Children's Hospital for 14 months. It was there that a director of the program, Michael Jackson, spoke of respite homes for children with medically complex issues and threatening illnesses. Michael had always wanted to be the person to build one in Utah, but after retiring he admitted that someone else would need to do it. His insight rekindled Jody's experience of knowing Sam.
At the time, in England and Scotland, there were between 50-60 respite homes serving children in their communities. There are currently only three children's respite homes in the United States. They are located in Arizona, Minnesota, and California. We believe the next will be in Utah.
The unanswered questions are who will do this, when will it be accomplished, where will this house be built, and how will it become a reality. We feel we have the answers!
Through his connections at Primary Children's Hospital, Jody learned that the doctors and nurses had often spoke about establishing a respite home. They were instead directed to focus on the amazing Rainbow Kids program that already existed within Intermountain Health. The discussions continued, but no plans for a respite home have been made.
We have completed all the legal work and established ties with groups to provide staffing and other means of support. We have also discovered hundreds of parents providing 24/7 care for their child so unselfishly. They often feel they are wearing down, but they keep pressing forward because of their love for their child.
Now we are prepared to move forward in a strategic way to build this respite home and provide some genuine support that has never been offered in Utah.
Learn about the difference that the respite home in Brooklyn Center, Minnesota made for Malikye and his family.
Hear what Ryan House in Phoenix, Arizona means to the Wentland family.
The experience of a long time resident, Charlie, at the respite home in San Leandro, California.
More about what it looks like at the California home.