Glycogen Storage Disease (GSD) is a rare condition that affects approximately 1-in-100,000 live births. There are over ten different types of GSD that inhibit the body from properly utilizing stored energy known as glycogen. Most involve excess glycogen deposits in the liver and many involve glycogen deposits in muscle tissue. Without proper care, patients suffer from hypoglycemia, seizures, stunted growth, and a failure to thrive. Until recent years, this disease was considered fatal. GSD patients are now living longer, healthier lives, but struggle every day to maintain a sense of "normalcy". Most GSD patients are on low-sugar diets that restrict almost all fruits, dairy products, and simple sugars. No candy, cake, ice cream, juice, or other sweet, sugary treats are allowed! Young children, who cannot consume their food orally for one reason or the other, use a feeding tube. In Reagan’s case, she has a g-tube. These children are prone struggle with eating disorders throughout their lives.
Although Reagan could face serious health concerns in the future that affect individuals with GSD, keeping her blood glucose levels between 75 and 125 consistently will ultimately limit the severity of these health concerns including tumors in her liver, liver failure and kidney failure, etc. Hypoglycemia is the major concern for Reagan because her body cannot release Glucose to address when her blood sugar drops. Her body has also become accustomed to functioning on such low blood sugar levels that over time, she hardly shows any visible signs until she is critically low. This is the main reason behind it taking several months for Reagan to start showing any symptoms of the disease. In her earlier months, she was eating more frequently and her blood sugar levels were staying in a safe range but as she started fasting longer and sleeping though the night, her levels were dropping to critically low numbers.
Due to its rarity, pharmaceutical companies do not invest a lot of money in GSD research, and very few doctors specialize in the disease. We are lucky to be able to see and be followed by a small team of doctors that help us manage Reagan’s disease to the best of their capabilities. The best option that has been presented to us in dealing with her disease and providing her a normal childhood and life overall is to purchase a Service Dog that would be trained to pick up on Reagan’s dropping blood sugar and could alert us well before she shows any signs or symptoms. The more stable we can keep her blood sugar levels until the time that a treatment may be discovered, the better the chances for her to be one of the first cured. Our goal is to gain enough funds to have a Service Dog for Reagan by the time she starts kindergarten. Having a Service Dog placement is pretty pricey and that is why we are fundraising. Here are some of the things that the fundraiser will pay for: shipping cost for Reagan’s scents samples (hypoglycemic lows) for training, travel expenses associated with the dog, specialized equipment and supplies for the dog, on-going veterinary costs for the dog, and Medical and Life Insurance for the dog just to name a few.
Thank you for taking the time to read our campaign and we hope to, at least, have taught you about GSD so that we can spread awareness about this disease and in hopes of future funding to help cure and eradicate GSD completely!