CFMC Recognizes Rare Disease Day®
Rare Disease Day® takes place on February 28, 2018. Cumberland Family Medical Center, Inc. (CFMC) celebrates Tanner Morgan, a Congenital Hyperinsulinism survivor. Tanner, now nine months old, is the son of oHealthy Kids Clinic School Nurse, Corey Morgan, LPN, and husband Isaiah.
“A few months after Tanner was born, we noticed he was sleeping all day, eating excessively, crying more than usual, and vomiting. After months of bloodwork, injections, and constant low blood sugar levels, Tanner was diagnosed with Congenital Hyperinsulinism,” explained Corey. Congenital Hyperinsulinism is a rare condition that causes individuals to have abnormally high levels of insulin, which is a hormone that helps control blood sugar levels. Those with this condition have frequent episodes of low blood sugar. In infant and young children, these episodes are characterized by a lack of energy, irritability or difficulty feeding. Repeated episodes of low blood sugar increase the risk for serious complications such as breathing difficulties, seizures, intellectual disability, vision loss, brain damage and coma.
“Tanner’s case was new to the team. Following testing, Tanner was transferred to Cook’s Children’s Hospital in Fort Worth, TX, a hyperinsulinism treatment center, where he spent several weeks receiving treatment. Because most hospitals encounter only one or two cases of the disease a year, please note that it is important for children to receive medical care from an experienced treatment center such as Cook’s Children’s Hospital or Children’s Hospital in Philadelphia,” continued Corey.
“Tanner’s journey for us as parents has been an emotional rollercoaster. We spent two months of his life in a hospital room watching him being poked by needles, IVs and going in and out of surgery. We joined a Facebook support group of hyperinsulinism families to help us along the way. Having a child with a rare disease is very hard day in and day out. Our lifestyle has changed to ensure he receives the care he needs,” explained Corey. “If we could give advice to other families experiencing this disorder, we would encourage them to never give up. There are other families willing to listen to you and be your shoulder to lean on. Take advantage of a support group, as they will help you through any questions you may have. Life with Congenital Hyperinsulinism calls for many long days and nights, never knowing what to expect when it comes to sugar levels, but I promise it will be okay. Remember, you were given this life because you are strong enough to live it.”
About 60 percent of infants with Congenital Hyperinsulinism experience a hypoglycemic episode within the first month of life. The condition affects approximately 1 in 50,000 newborns. Because Congenital Hyperinsulinism is caused by genetic mutations, genetic testing can help identify the cause.
For more information on Congenital Hyperinsulinism, please visit the National Organization for Rare Disorders by clicking here. Information on Rare Disease Day® can be found at www.rarediseaseday.org.