The state of South Carolina is home to a substantial number of medically fragile children. At this time, the state does not have a home for children who are classified as medically fragile. Rachel Lee, founder and Executive Director of Heaven’s Hope Inc., has a vision to create a loving place for these children to call home. Medically fragile children are those with chronic conditions who require continuous medical care, as well as those who are prone to frequent hospitalizations. Many of these children stay in the Pediatric Intensive Care Unit (PICU), in the hospital, since the families are either unable or unwilling to care for them at home. Some children may go into foster homes that have specialized training to care for them. But these foster families are not medical professionals and there are simply not enough of them. Rachel’s plan is to create a long-term care facility that provides skilled 24-hour nursing care, treatments, and therapies that the children require. They will also host an on-site school that individualizes its curriculum to meet the unique needs and learning abilities of each child.
Rachel knew for the greater part of 20 years that one day she would be the director of a children’s home. Rachel was first influenced around 1996 when she was a candy-striper at a local hospital and would volunteer in the PICU where her mother worked. It was then that she was able to spend a lot of time playing with a little boy named JJ who lived in the unit. He came into the unit at a few months old and was very ill, due to his medical needs he was unable to go home and simply lived in PICU. Rachel shares, “The nurses who cared for JJ treated him like their own. Under the personal care of these nurses, he was given toys and clothes, taught how to walk, and was potty trained. Some of my fondest memories are playing with JJ, his energy, his smile and eating orange Popsicles!” When JJ turned three years old, it was decided that he needed to go to a home that was able to care for his unique needs. A place where he could grow and thrive. However, the type of home did not exist in South Carolina, and still does not today. JJ went to a children’s home in North Carolina. “As a young teen, I was so upset to see him leave the hospital where he was so loved and cared for, to go to a home in another state,” explains Rachel. “My mother and I, along with several of the nurses, traveled to visit him and to make sure he was settled in and happy.” Rachel was impressed with the children’s home where medically fragile children were able to play and have fun despite their physical limitations. JJ was able to eventually live with his mother, go to public school, and attend prom. He was also able to have one of his paintings displayed in the Smithsonian.
JJ’s life inspired Rachel, and opening a children’s home became her dream. “JJ’s life is a testament to what a loving, skilled caregiver and a warm home environment can do for a child,” says Rachel. Today, Rachel is working to open Heaven’s Hope Inc. in the Florence area. The organization has a board of eight members of the community from a variety of backgrounds, all with one common cause – caring for children with critical medical needs. Rachel shares, “God brought to me a core group who have a heart and a passion for medically fragile children. There are many things that go into making something of this magnitude work successfully. With God leading the way through this entire process, I have full confidence that He will continue to lead us to the right people and make every single detail fall into place.”
Currently, the needs of Heaven’s Hope are primarily financial due to the fact that they are pioneering the first medically fragile children’s home in the state. At this time, their start-up costs are very large. A facility has to be built, essentially from the ground up. Executive positions as well as staff positions must be created and filled. As a non-profit organization, they are trying to keep costs low, however, start-up costs for the first year (to include equipment, supplies, taxes, insurance, etc.) will total to approximately a minimum of four million dollars. For children living at the PICU, national average cost are about $4,000 per 24 hour period. It is Heaven’s Hope’s plan to be able to care for a medically fragile child at the cost of $600 per 24 hour period. Donations are greatly appreciated and can be made on their website, www.heavenshopesc.com.
Heaven’s Hope Inc. will host a fundraising event, the Swamp Fox Highland Games and Celtic Festival, on Saturday, November 17. It will be held at the Columns Plantation in Florence from 9 am to 5 pm. The event will be the first highlands games in this area. Activities will include a kid’s glen, highland athletes competing, as well as authentic Celtic vendors and Scottish food. It will be a fun-filled day that everyone of all abilities can enjoy.
Rachel was born and raised in Darlington. She currently lives with her husband, Joe, two daughters, Kylie (11yr) and Shaelyn (10yr) and two fur babies in Florence. Rachel has been a Registered Nurse for six years and currently works in the Pediatric Intensive Care Unit at McLeod. She is also pursuing a master’s degree at USC-Upstate.