When you meet six-year-old Lyla Snee, the first thing you will notice is her beautiful blond hair and her incredible smile. She has a personality that is infectious and certainly isn’t afraid to talk to someone she has just met. If you ask her what she likes to do, she will likely tell you about her growing affinity for soccer and gymnastics. She likes My Little Pony and has an older sister named Hannah and an older brother named Caleb. Sounds like a typical little girl, but if you take the time to sit and talk with Lyla, she will proudly tell you,
“I have diabetes!” At just six years old, Lyla has had more life experiences than most adults. When Lyla was just 14 months old, she was diagnosed with Type 1 Diabetes.
Unlike Type 2 diabetes which can be controlled or even reversed with diet, exercise and medication, Type 1 cannot be prevented or reversed. Type 1 can, however, be managed using insulin injections and continuous, around-the-clock monitoring. Patients with Type 1 diabetes have a pancreas that produces little or no insulin. Insulin is the hormone needed to allow sugar, or glucose, to enter cells to produce energy. The lack of insulin to let glucose into cells causes sugar to build up in the bloodstream and can cause life-threatening complications.
Lyla’s Story
When Lyla was 14 months old, her mom, Jenny, took her to the pediatrician and learned that she had a double ear infection, “The doctor told me that I should expect her to not eat a lot and that she will sleep a lot and this is perfectly normal. I mentioned that she was drinking a lot and was told that this was good because she was probably trying to keep herself hydrated.” All of this took place over a weekend, and by the time Monday rolled around, it was obvious to Jenny that this was anything but a typical ear infection. “She was extremely lethargic and had a strange breathing pattern,” Jenny recalled. Lyla’s dad, Matt, recalled that she “couldn’t get enough to drink. At 14-months we are talking about formula and water, and nothing was enough.” Even with the increased thirst, it wasn’t immediately apparent that anything other than an ear infection was going on. It wasn’t until Jenny noticed an unusual breathing pattern that things took a dramatic turn. This unusual breathing pattern is called Kussmaul breathing. Kussmaul breathing is a deep and labored breathing pattern often found in patients with diabetic ketoacidosis or DKA. Diabetic ketoacidosis is a life-threatening condition that develops when cells in the body are unable to get the sugar they need for energy due to the lack of insulin.
As soon as Lyla arrived at the emergency room in Fredrick, Maryland, the attending physician knew what was going on. “She could smell her breath and said it smelled fruity,” Jenny said. While fruity smelling breath may sound pleasant and harmless, for diabetics it is a sign of DKA. Matt said that as a parent, this isn’t anything that they would have thought to look for. “What parent, unless you have someone in your family with diabetes, which we don’t, would even contemplate diabetes as an option of what is going on.” Doctors determined that Lyla was in full-blown diabetic ketoacidosis. Once they felt she was stable enough, Lyla was airlifted, along with her mother, to Georgetown University where they were better equipped to treat her.
Jenny, Matt, and Lyla spent the next week at Georgetown University Hospital learning the ins and outs of Type 1 diabetes. At that moment, their lives stood still and would never be the same again.
A Family Turned Upside Down
In addition to 14-month-old Lyla, Jenny and Matt had a 5-year-old and a 2-year-old waiting for them. Thankfully, Jenny’s sister and Matt’s parents were able to come help care for the children they had to leave at home. “I remember when I got to the hospital and there she was, 14-months-old, with tubes coming out of her. I lost it almost immediately, especially when they said diabetes,” Matt said. “I didn’t even know what that meant, but I knew it was bad.” At that moment, all of the plans and goals this family had, changed forever. Their only focus from that point forward was to learn how to help Lyla, and their family, learn to live with Type 1 Diabetes. “I remember a day or two after we got to the hospital, and Jenny said that she was done with school and that she had to focus on this full-time. It definitely changes your plans in an instant,” Matt said.
For older sister, Hannah, who was five at the time of Lyla’s diagnosis, the most drastic change has been the one-on-one time and attention she has been able to get from her mom and dad. When asked what the main difference has been for her since her sister’s diagnosis, Hannah said, “I lost a lot of attention.” Even though she feels she has had to sacrifice some of her personal time with her parents, there is no resentment or anger in her tone. She is mature for her young age and speaks about her sister’s illness with confidence and empathy. It is obvious that although she has had to give up much of her childhood to diabetes, Hannah’s first concern is for her sister’s health and happiness.
The fact that Lyla was diagnosed at such a young age means that she has little, if any, memory of life before Type 1. So far, this has proven to be a blessing for the Snee family. But as any parent will tell you, the teen years are the ones they fear the most. In addition to the normal teen angst that most girls encounter, Matt and Jenny have the added concern that any teen rebellion could put Lyla’s health in danger. “We’ve heard a lot of horror stories from other families with older children,” Matt said. Jenny explained that by manipulating their sugar levels and allowing them to get too high, some teen girls are using their diabetes as a form of eating disorder. “It has become very common among teen girls,” she said.
Shortly after Lyla’s diagnosis, Matt and Jenny decided to move their family from Maryland to North Carolina to be closer to Matt’s parents. They wanted to make sure that their children had as much of an opportunity to spend with their grandparents as possible. Moving not only meant finding a new home, school, and jobs, but also new doctors for Lyla. Thankfully, the Triangle is home to some of the best hospitals in the country, and Matt and Jenny have found doctors with UNC and Duke to help care for their daughter.
During their time in Maryland, Matt was in the restaurant management field which meant working close to 60 hours per week. This left very little time to spend with his family, and Matt decided that after the move to North Carolina he would make a change in his career.
When you have a child with Type 1 diabetes, it is important that there is always someone around who can watch and observe how the child is doing. Matt and Jenny decided that the best way to ensure there is was always someone around for Lyla was to work opposite shifts. Jenny works regular business hours during the day, and Matt works at night. This allows someone to be home at all times, even when Lyla is in school. Lyla wears a pump that allows her and her parents to regulate the amount of insulin she receives, and at six-years-old, Lyla knows how to manipulate the pump, test herself and even give herself shots if necessary. “Can I show you my pump?” she asked as she proudly reveals a bright pink attachment that she wears around her waist. Even though Lyla is extremely educated on what her diabetes means and what she has to do, it is helpful that the teachers and staff at her school, West Lake Elementary, are equally aware and educated and can call Matt or Jenny if there is ever a question about what needs to be done. “We can’t say enough about her school, it is amazing,” Matt said.
It was very important to Matt and Jenny that Lyla has as “normal” a childhood as possible. They decided early on that they weren’t going to allow diabetes to dictate what Lyla, or their family, could or couldn’t do. “We weren’t going to take her childhood away from her,” Matt said. “Everyone has a different opinion of how they are going to handle having a child with Type 1. We decided that we weren’t going to take her childhood away from her.” In fact, for Lyla, and most children with T1D, if you didn’t know that she had a pump under her shirt, you would never think she has diabetes. She goes to school every day, she goes on field trips, has lunch with her friends, goes to recess with her friends and has the same daily experiences as everyone else her age. Type 1 diabetes is a silent disease and can strike anyone at any time. It is likely that most people know a child who is battling Type 1 diabetes and they don’t know it.
Awareness and Education
After Lyla’s diagnosis, Matt and Jenny found themselves learning everything there was to know about Type 1 diabetes, both from the doctors and hospitals and on their own. Several doctors told them that after everything was said and done that they will likely be more educated on diabetes than any doctor they see. But it hasn’t stopped there. The Snee family is heavily involved with the Juvenile Diabetes Research Foundation (JDRF) and are avid supporters of their fight for research into finding a cure for Type 1 diabetes. Over the years, they have participated in and organized fundraisers including walks each year, golf tournaments and charity bike rides. Many of the local restaurants and breweries in Holly Springs have also participated in charity events and have donated a portion of their sales to help raise funding and awareness through JDRF, including Rudy’s Pub and Grill in Apex where you can find Matt behind the bar on most nights.
One of the most frustrating aspects of Type 1 diabetes for any parent is the lack of testing and awareness. Right now, there is no standard for testing for type 1 diabetes at any wellness check, annual physical, or sick visits for children. In most cases, unless a child is showing symptoms, doctors will not routinely check for diabetes. The goal for many families is to implement a policy that encourages doctors to check for diabetes on an annual basis. The screening is a simple blood test that is inexpensive and quick and can give results immediately. Because there is such a lack of testing and awareness, many parents don’t know what signs to look for.
Symptoms can often resemble those of the flu, which makes it more important to offer screenings during sick visits. Symptoms can include:
Increased urination
Increased thirst
Weight loss
Increased hunger
Feeling or acting lethargic
It is important for parents to be aware of the symptoms and if a they feel their child is acting differently, or if the symptoms are not resolving on their own to seek medical attention.
Lyla is a beautiful little girl with an amazingly loving family. Lyla is a beautiful little girl who is living each day with a deadly disease. Lyla is a beautiful little girl who has taken this horrible disease and has owned it and is proving to everyone that she won’t allow it to stand in her way. With the wisdom and courage of someone way beyond her years, Lyla and her family are fighting for a cure. They are fighting for awareness, and they are fighting to someday live in world without Type 1 diabetes.
