Our Families
While homes like this one serve a variety of purposes, their ultimate goal is to help families. On this page, you’ll be able to read stories of the kinds of families that our house is being built for.
The Johnson Family
Hayley Kristian Johnson came into the world as a medical puzzle to the many medical teams that flew to the hospital after her birth to figure out her set of circumstances.
From the beginning, Hayley needed many orthopedic surgeries to replace missing bones and repair those that were fractured. After she was discharged from the NICU, she began having surgeries when she was 4 months old and continued having many major surgeries each year, including a 25-hour anterior and posterior spine fusion when she was 2½.
Throughout these surgeries and procedures, I felt supported by the many healthcare providers that came into our sphere. Somehow, together, we kept one another resilient in the face of dire predictions.
Once her years of surgeries ended, Hayley got to live a life of great adventure—snow skiing with friends, parasailing, hiking, biking, swimming in the ocean with dolphins at the Dolphin Research Center in Key Largo, Florida—taking every opportunity to live life to its fullest!
Hayley was a great teacher for all of us, especially in bringing joy to any situation no matter how difficult. Hayley passed away unexpectedly in 2005, and we celebrated her memory with 350 of her “closest friends” from every walk of life.
We are so supportive of any endeavor that supports children and families living with life-limiting circumstances.
-Tracy Price-Johnson, Mother of Hayley
The Rosenberg Family
My daughter Zeva was born on November 30, 1991. She looked fine and had a good Apgar score. My wife Lee had difficultly in conceiving and we were ecstatic to have, what we thought, was a healthy child. Everything looked good for the first few months. My wife Lee was an RN and licensed acupuncturist and felt something was wrong with Zeva. She felt Zeva was not meeting common milestones in her development and touched base with Zeva’s pediatrician. The pediatrician said babies developed differently and basically assured us the Zeva was fine.
After a few more months, Zeva was not thriving and we became increasingly more worried about her health. For example, she never rolled over after close to a year. A friend of ours had a friend that worked at Children’s Hospital and suggested we talk to her. The friend of the friend asked us many questions about Zeva. One question was whether Zeva startled easily. Zeva startled many times a day and appeared to have seizures. Lee and I had grandparents in Eastern Europe who were Jewish and there was a possible probability that she had Tay-Sachs disease. We were told to see a pediatric ophthalmologist who could detect Tay-Sachs. It was determined that if he saw a cherry-red spot in her retina she likely had infantile Tay-Sachs and would likely die anywhere from 2 to 3 years of age.
On December 9, 1992 the ophthalmologist clearly saw the cherry-red spot and our lives were turned upside town. In the spring of 1993 Lee and I attended a National Tay-Sachs and Allied Diseases annual conference in New Orleans. Several of the parents of these terminal children talked about the nightmare of their situation. Lee looked over at me and firmly stated that our life with Zeva would not be a nightmare.
Toward that end we embraced Zeva the way she was. Because she would likely die at 2 or 3, we celebrated her birthdays every month. We were living in Lookout Mountain Colorado and took her on countless hikes on the trails in the area. We bought a nice stroller and put pillows all around to make her comfortable. Everything we did for the next few years was to make Zeva comfortable.
We didn’t’ know it, but we were practicing palliative care for her. We got support from the Denver Hospice for close to a year. Lee and I were both working full-time, but were fortunate to find a neighbor who provided respite care for Zeva. Gerta loved Zeva. When Lee and I went to another Tay-Sachs conference out of town, Gerta asked that if somehow we died in a plane crash if she could have custody of Zeva!
Despite sadness in losing a child, there was much joy in our lives and support from Gerta, friends, and my older daughter Tamar. Zeva died peacefully on June 22, 1995.
-Barry Goldenberg, Father of Zeva