One Girl's Holiday Wish For a Service Dog

FRAMINGHAM, MA- The holidays can be a stressful race to Christmas day, and while you watch your family unwrap the gifts you worked hard to pick out you can finally rest and recuperate. Imagine that feeling just never went away, a permanent exhaustion hanging over you. This is Emma Bianco's everyday.

She lives with a disorder called narcolepsy with cataplexy and since she's been diagnosed, Emma has lost a job, her license and in her eyes, a sense of independence.

This Christmas, Emma isn't asking for fancy tech gadgets or the latest winter trends like most 20-year-olds. She is calling on her community to help her raise money for a service dog that can change her quality of life and help her navigate the new territory that comes with a lifelong disorder.

"When people think of narcolepsy they think of someone slumped over at the dinner table asleep, but it's so much more than that," Emma said. Narcolepsy is a neurological disorder that causes persistent sleepiness. Many adults aren't formally diagnosed until they reach their forties but for many the onsets of symptoms begin in the twenties. There are two different kinds of narcolepsy: narcolepsy with cataplexy and without. Cataplexy is muscle weakness triggered by strong emotions.

When Emma laughs too hard or gets too anxious or upset, her body loses muscle tone and, at its worst, can momentarily go into a full body paralysis. "When people see it, it just looks like I fell asleep or like I'm unconscious," Emma said, but she can hear and feel everything around her. Trapped in her own body, Emma has to try to calm herself down as she hears people panic around her. "It's really frustrating, it just makes it worse because it makes me more anxious," she said.

Having to tip-toe around her own emotions to prevent an episode has become Emma's new normal but the list of triggers is only getting longer. This halloween, haunted houses were undoubtedly out of the question and with her birthday coming up the day after Christmas, Emma knows there is no chance for a surprise party. The excitement would be too much and cause an episode. Just last week as she was holiday shopping with her mother, the sound of a door slamming was startling enough to drive Emma into a small episode.

One of the first major cataplexy episodes Emma experienced was in April. "It was about seven o'clock and I was so tired," Emma said. She had been watching TV with her boyfriend, Nick, and was anxious about telling him she couldn't stay up anymore. "I was so nervous to tell him that as soon as I did I just collapsed," she said. It was an hour before Emma could move again and for her and her family watching, it felt like a lifetime.

"Watching her go through that sleep paralysis was just so scary," Emma's boyfriend Nick Zonghi said. That episode was the first of many, some severe enough to send her to the hospital which Emma said made things worse. The chaos and panic that comes with a hospital trip increases stress, making it harder to come out of. That first episode also launched her on a path to a diagnosis and treatment.

With the help of Neurologist Jami Johnsen at Brigham and Women's Hospital, Emma was formally diagnosed and has since started the long process of trying out new medications. So far Emma is taking five different medications that all deal with a different aspect of the disorder. Her current medication mashup is helping reduce the frequency of episodes from eight a day to four. While it's a small victory, it's still not perfect.

Learning the disorder's triggers and managing the mountain of medication Emma has started is all new, but she said the one thing that will help make her days easier is a service dog. "A service dog would help take the strain off my body when I go into an episode," she said. Emma adds that the emotional support could also help keep episodes at bay. "Anxiety is a daily struggle for me and a service dog could really help alleviate some of that," she said. Emma has Generalized Anxiety Disorder as well as Social Anxiety Disorder which make dealing with cataplexy episodes much harder.

Service animals are being trained for a variety of new disorders, including how to smell a narcoleptic attack coming on based on the biochemical changes in a person's sweat. Service Dog Academy in Seattle, Washington trains dogs to provide up to a 5-minute warning of an impending sleep attack. The dogs learn everything from using their own bodies as pillows to cushion the fall an episode could bring, to fetching medication and providing a calm environment for their human after coming out of an episode.

Emma's mother, Dhana Bianco is her biggest comfort and fiercest advocate. Since birth, Dhana said she knew Emma was different. "She was the only one of my five babies to sleep through the night," Dhana said. When the anxiety overwhelms Emma to tears, Dhana is the first one to comfort her, even if it means literally hopping into bed wth her so she know's she's not alone. But Dhana can't be there all the time.

As much as she wants to swoop in and save her daughter the pain, there is only so much she can do. Emma was recently let go from her job because of her disorder and now spends much of her days home alone, a dangerous prospect for a narcoleptic. Having a service dog with Emma would not only alleviate the loneliness she feels but offer her family reassurance that a second pair of eyes are keeping her safe.

Dhana feels for her daughter on a level that supersedes a mother. She lives with Multiple Sclerosis and has felt the toll of a life-long illness. "It's so much harder for Emma because no one can see what she's going through, its not like she looks sick," Dhana said.

Finding a solution and options that best suite Emma's situation was only half the battle. A service dog that is fully trained could cost $25,000. Training a dog to become a service animal could start around $150 an hour and go up to $250 an hour, quickly ringing up a bill in the thousands. Emma, like so many others in her position, is raising money to afford her dog. "I really have to rely on the help of the community," Emma said. She started a GoFundMe page with a goal of $25,000 for a service dog.

Emma says she knows the fundraising will take time and the process of getting a service dog is a long one, but the effort will be worth it. "I have this disorder for life, that's not going to change. I can only work to make things easier for myself now," Emma said.

This Christmas, Emma will sit with her family as they unwrap presents and enjoy the day, but the thought and stress of a potential episode will linger over her. Maybe by this time next year she'll have a service dog by her side, reminding her she isn't alone in tackling this disorder.

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Photo Credit: Samantha Mercado/Patch