Wellington resident Madison Thompson was 2-weeks old when she underwent her first surgery. She had nothing to say about that decision. But her mother, Holly Thompson did, and the input she shared with the anesthetist saved her tiny daughter’s life.
Born weighing 6 pounds, Madison had not been eating well and her weight had dropped to 4 pounds, as measured on her pediatrician’s scale. At the hospital, prior to surgery, a nurse explained that because they did not have a small scale, Holly would be weighed, then weighed again with Madison in her arms and the difference would be recorded as Madison’s weight. “Twelve pounds,” said the nurse.
“I don’t think so,” said Holly. “In fact, I know she doesn’t weigh that much.”
“Oh well, we’ll put down 12 pounds on her chart,” the nurse said.
When the anesthetist arrived, Holly stepped up and objected to the weight that had been recorded on Madison’s chart. “That baby does not weigh 12 pounds,” the anesthetist agreed and demanded a baby scale be brought from another floor.
“She would have died if I’d given her anesthesia for a 12-pound baby,” the doctor said.
All that occurred 18 years ago but it became the seed that this year grew into the founding of The Sweet Destinee Foundation, dedicated to offering programs and opportunities for youth and young adults with chronic and terminal diseases to advocate for themselves, to foster their personal growth and self-expression and to seek strength, hope and joy in their lives.
The surgery when she was a tiny baby was only the first of a continuing round of doctor’s appointments, surgeries and hospital stays for Madison. It took visits to 57 specialists and four misdiagnoses before she learned that she had mucolipidosis, a degenerative disease that is extremely rare and has required two knee and two hip replacements. It also affects Madison’s energy level, a fact that made it impossible for her to attend public school after second grade. She has been homeschooled since then.
Holly and Madison have a close bond, forged by Holly’s love for and dedication to her daughter. “No. She never experienced teenage rebellion,” Holly says, “She’s an old soul.”
Madison is honest about the fact that developing a social life is sometimes difficult. “It’s hard to maintain a friendship when you have to cancel plans because of illness.”
She treasures her long-time best friend, Becca, who always understands.
As she grew older, Madison became increasingly aware of the need for patient self-advocacy, especially for younger patients. For many years, her mother continued to interact with physicians and advocate for her daughter. When she was 15, Madison met Dr. Laura Pickler at Children’s Hospital in Denver and the two had a conversation that became life-changing for Madison.
Pickler pulled no punches. “Here’s what you do. Go get a driver’s license. Start ordering all your own prescriptions. And from now on, your mom is not allowed to talk at your doctor’s appointments. You speak for yourself.”
Madison did just that. Sometimes doctors were surprised when she did so, but in the end, she gained their respect.
At her 16th birthday, she made one wish; that she would one day have a diagnosis for this disease she had been living with since birth. The day after her birthday, a phone call from a geneticist announced that they had a diagnosis for her. “In some ways it didn’t change anything. I still have the disease and there is no cure for it but the search is now over. Putting the puzzles pieces together was important for me,” Madison said.
During her senior year of high school, Madison came up with an idea for a senior thesis project that was close to her heart. Her mom encouraged her, and together they moved forward to found the Sweet Destinee Foundation, Inc. designed to make a difference in the lives of chronically and terminally ill youth and young adults. In July 2016, they received 501(c)(3) non-profit status, and on Dec. 7 the foundation will launch officially at the first Giving Gala at the Fort Collins Senior Center between 5 and 6:30 p.m. The event is open to the public and will include a short presentation on the mission of the foundation and the ways individuals and businesses can become involved. And there will be entertainment by Loveland Academy of Music, a group Madison plays the guitar with, as well as special appetizers and a cash bar.
The Sweet Destinee Foundation has been a family effort. Madison’s grandparents Lauren and Gary Smith have been involved from the beginning. Along with Holly and Madison, they often sit around the kitchen table completing paperwork and making plans for the future of the foundation. Sweet Destinee has developed three seminar programs: one for patients, another for caregivers and a third for doctors, nurses and social workers. They are usually offered in medical venues, convenient for those participating.
In the coming year Madison says the foundation will branch out beyond Colorado in hopes of making a difference in the lives of more youth and young adults. Her willingness to share her own story is a double win. By figuring out a way to help others, Madison has enhanced the quality of her own life, the lives of those who share the workload with her and young people dealing with threatening medical issues.