Dwarfism and Little People Health Awareness Event, Oct. 18 in Holly Springs
October 18, 12 pm - 5 pm FastMed Urgent Care, Lowes Foods, Base Like Draft House and many other local businesses will be helping to host a Dwarfism and Little People Health Awareness Event in the Holly Springs Crossing Parking lot, located at the corner of Holly Springs Road and Base Lake Road in the town of Holly Springs.
Open to the public, the event has something for the entire family, from live music and entertainment, to good food, games for kids and adults, prizes and raffles and information Dwarfism.
The event is being put on by Lindsay Thomas who hopes to educate the community on Dwarfism, its causes, changes for those with family or friends with dwarfism and improvement of treatment and health care options for little people. Lindsay’s daughter Lilly was diagnosed shortly after birth, and their family is paving the way for brighter futures for parents of and children with Dwarfism.
Please click here to join the event and let us know you are coming so we can plan to have enough for everyone!
Personal Letter from Lindsay
On February 28, 2013 my husband Joel and I welcomed our first child into the world. After twenty and half hours of labor, a C-section, and a short stint in the neonatal intensive-care unit, we were informed that our child showed signs of achondroplasia, a fourteen letter word that we could barely pronounce much less understand. Three weeks after arriving home with our baby girl it was confirmed through genetic testing that our little girl was indeed a little person. Our daughter was born with a disorder of bone growth that causes the most common type of Dwarfism. We were shocked because my husband and I are both of average height and neither of us have family history of Dwarfism. We learned that approximately 80% of little people are born to average height parents and it occurs in approximately 1 in 24,000 births. We were given a wealth of overwhelming information in a three ring binder regarding medical issues that our child could possibly face including but not limited to sleep apnea, hydrocephalus, and skeletal deformation that could require bracing. At two months of age it was confirmed through a sleep study that our daughter Lilly was demonstrating periods of central apnea where her automatic response to breath is interrupted and could cause periods of oxygen deprivation. It was suggested that she have spinal decompression surgery as soon as possible. This surgery consisted of shaving the base of her skull (foramen magnum) to allow for more room for the spinal cord to exist without compression. One of the riskiest parts of the surgery for Lilly was undergoing anesthesia due to her inability to breath for herself consistently. The surgery was a success and after about two weeks of recovery we started to notice improvements in her physical and cognitive development.
Lilly is now sixteen months old and in addition to her spinal decompression surgery has underwent two surgeries to receive tubes in her ears, adenoids removed, and three sleep studies to monitor her breathing. She has been receiving physical and occupational therapy to aid in her physical development since she was about four months old. We see doctors at Duke, Chapel Hill, Wake Med, Rex Hospital, Raleigh Neurology, Western Wake Pediatrics, and ENT and Audiology Associates to maintain appropriate care for Lilly locally but also travel to Nemours Hospital in Wilmington, Delaware to seek the expertise of a skeletal dysplasia specialist twice a year. It has been a scary yet beautiful journey navigating life for our precious daughter. However, it is very frustrating as a parent to be told "I'm not sure" or "I'll have to check on that" by medical professionals when you are facing surgeries or other important medical decisions that will affect your child forever.
We've been very fortunate to have a wonderful group of doctors who are willing to learn and educate themselves as well as us as parents on the appropriate care for little people. But not all families are as fortunate. Familiarity and understanding for the little people community needs to be brought to the forefront, starting with the medical community. Broader health care provider education and training for treatment of children with Dwarfism gives confused parents a solid starting point to gain awareness and acceptance of their situations. The scariest part for me as a mother learning about Lilly's diagnosis was the unknown, and I am passionately working within the community to increase awareness, education and acceptance of children born with Dwarfism, and increased access to medical treatment of those children and little people. As her biggest advocate I aim to provide a loving and accepting community for my daughter, as well as all other little people through education and awareness on Dwarfism.