Meet Ainsley Paige Higgins, born in Atlanta, Georgia on June 13, 2005 to Lisa and Matthew Higgins. At four weeks of age, Ainsley began having seizures that were unexplained for over a year and a half. Finally, after multiple hospitalizations, eight different seizure medications, multiple specialists, innumerable tests, and therapies galore, Ainsley was diagnosed with Complex I OXPHOS mitochondrial disease in November of 2006.
In many ways, Ainsley is like a typical three year old. She loves Sesame Street, Elmo and Barney; listening to music and playing with musical instruments; and animals of all shapes and sizes. In many other ways, she is far from being a typical three year old. She only started walking independently (although not gracefully!) at 27 months of age; while she can vocalize and make sounds, she cannot talk. She has difficulty eating and chokes on food with any texture; she cannot jump or run or climb. While Ainsley loves people – especially other children – she cannot be around them very often because of her compromised immune system and her body’s inability to fight off simple infections due to her mitochondrial disease.
As the years go by, mitochondrial disease takes its toll on her body in silent ways. When she gets sick, one of her organ systems stops working or her seizures will not relent, and she ends up hospitalized for longer and longer periods of time until her body can stabilize again. In 2007, she was hospitalized five times totaling over seven weeks. In 2008, she was hospitalized for over 17 weeks including multiple admissions to the Pediatric Intensive Care Unit. Most recently, Ainsley’s stomach all but stopped working and she was fed exclusively by total parenteral nutrition (TPN) through a central line that entered her chest. Luckily, within five months, she was slowly able to wean from the TPN and now receives all her nutritional requirements through a j-tube which bypasses her stomach. These illnesses and complications result in regression and loss of many developmental milestones. Ainsley is amazing, however, as she has re-learned to walk four times in her short life!
Ainsley is the sweetest and most lovable little girl you will meet. She loves people, loves to laugh, and loves to give kisses. She has an amazing disposition; is very social, smart and curious; and while she does not verbally communicate at this time, she does use vocalizations, pointing and some signs to tell us some of the things she wants or needs.
To honor Ainsley and her continuing battle, Ainsley’s grandmother, Sharon Simon of Massillon, Ohio, and Ainsley’s parents established the Ainsley Paige Higgins Research Fund. Through the United Mitochondrial Disease Foundation (UMDF), money donated to this fund goes to research in Ainsley’s name.
The UMDF was formed by families affected by mitochondrial disease. Like the Higgins family, the UMDF founders wanted to help others affected by the disorder. The Foundation provides support to families and funds research into mitochondrial disease.
Mitochondria produce more than 90 percent of the body’s energy. When these tiny parts of the cell can’t do their job, the body doesn’t get the energy it needs, resulting in a wide range of debilitating and sometimes fatal symptoms. Every thirty minutes, a child is born who will develop a mitochondrial disease by age 10. Most of these affected children will not survive beyond their teenage years.
Through research, the medical world one day will have the resources to help children like Ainsley win the battle against mitochondrial disease. Until then, please help the Higgins family and the UMDF bring “Hope.Energy.Life” to everyone affected by mitochondrial disease by donating to the Ainsley Paige Higgins Research Fund.