Elle & Coach

1. A mother's journey begins with her daughter's unexpected diabetes diagnosis

"Mom, I'm scared," she said. She slid off the examination table and climbed into my lap. I put my arms around her, and despite how big she seemed compared to our little ones, in that moment she felt tiny. Fragile.

Life-changing diagnosis. Stefany Shaheen's world is turned upside down when her eight-year-old daughter, Elle, is diagnosed with type 1 diabetes. The family's Thanksgiving trip to the White Mountains becomes a nightmare as Elle's symptoms worsen, leading to an emergency room visit and a shocking blood sugar reading of 964 (normal range is 80-120).

Emotional impact. The diagnosis hits the family hard, with Elle feeling scared and confused, and her parents grappling with guilt and fear. Stefany realizes that their lives will never be the same, as they face the daunting task of managing a chronic condition that requires constant vigilance and care.

2. The daily struggle of managing type 1 diabetes in a young child

"I hate that they have a higher risk because of me."

Constant monitoring. Managing Elle's diabetes becomes an all-consuming task for the family. They must:

• Check blood sugar levels 8-10 times a day
• Calculate insulin doses for every meal and snack
• Wake up in the middle of the night to check blood sugar
• Adjust insulin for physical activity, stress, and growth spurts

Emotional toll. The constant vigilance takes a toll on the entire family:

• Elle feels different from her peers and struggles with the burden of her condition
• Siblings worry about developing diabetes themselves
• Parents experience anxiety and fear, especially during the night

3. Hope emerges through medical trials and advocacy efforts

"There are things worth fighting for, even if you're not going to win."

Participation in research. Elle volunteers for medical trials, including:

• A drug therapy aimed at extending natural insulin production
• Testing of an artificial pancreas prototype

Advocacy work. The family becomes involved in diabetes advocacy:

• Attending JDRF Children's Congress to speak with legislators
• Working to overturn the ban on stem cell research
• Raising awareness about the differences between type 1 and type 2 diabetes

These efforts provide hope for better treatments and a potential cure, while also empowering Elle to make a difference for others living with diabetes.

4. The unexpected solution: A service dog named Coach

"Trust the dog."

Discovering medic-alert dogs. Stefany learns about service dogs trained to detect blood sugar changes in people with diabetes. Despite initial skepticism, she decides to pursue this option for Elle.

Meeting Coach. After a two-year wait, Elle travels to Kansas to meet and train with Coach, a yellow Labrador. The bond between Elle and Coach is immediate and powerful, surprising everyone with its strength.

Coach's abilities. Coach demonstrates his remarkable skills:

• Alerting to high and low blood sugars, even before Elle feels symptoms
• Waking Elle or her parents during nighttime lows
• Providing a sense of security and independence for Elle

5. Coach transforms Elle's life and empowers her independence

"Coach wasn't just keeping Elle safe to give us some relief. He was empowering her with the independence she'd need in order to become a healthy adult."

Improved diabetes management. With Coach by her side, Elle:

• Checks her blood sugar more frequently without reminders
• Catches dangerous highs and lows more quickly
• Feels more confident in managing her condition

Increased independence. Coach's presence allows Elle to:

• Sleep away from home with less anxiety
• Participate in activities without constant parental supervision
• Take more responsibility for her own care

Emotional support. Beyond his medical alerting abilities, Coach provides:

• Comfort during difficult moments
• A sense of security and companionship
• A positive focus for Elle's diabetes management

6. Overcoming discrimination and finding acceptance in the theater community

"Mom, if there's a chance this can help me, I want to take that chance. And if this medicine they're testing could help other people not get diabetes, or—"

Facing rejection. Elle encounters discrimination when her longtime theater camp refuses to accommodate Coach, citing concerns about having a dog at the camp and Elle's medical needs.

Resilience and determination. Instead of giving up, Elle:

• Refuses special treatment in finding a new theater program
• Auditions for Boston Children's Theatre with Coach by her side
• Earns a spot in the program based on her own merit

Embracing differences. The Boston Children's Theatre:

• Welcomes Elle and Coach without hesitation
• Incorporates Coach into the show, giving him a role as "Bullwinkle the Dog"
• Uses the experience to educate the cast about diabetes and service animals

This experience teaches Elle that there are communities that will embrace her fully, diabetes and service dog included.

7. A shift from constant worry to appreciation of Elle's abilities and resilience

"I moved from a constant state of worry about my kid's chronic condition to a deeper, constant appreciation for my kid's abilities. Elle had become a powerful force for goodness in the world. She could do this."

Recognizing strength. Stefany begins to see Elle's resilience and determination in the face of adversity, realizing that her daughter is capable of handling more than she initially thought.

Empowerment through challenges. The family's experiences with:

• Diabetes management
• Medical trials
• Advocacy work
• Overcoming discrimination

All contribute to Elle's growth as a confident, capable young woman.

Shifting perspective. Stefany's outlook changes from:

• Constant fear and worry about Elle's health
• Trying to protect Elle from every difficulty
• To appreciating Elle's ability to face challenges head-on
• Recognizing the positive impact Elle can have on the world

This shift allows both Elle and her family to focus on her abilities and potential, rather than being defined solely by her diabetes.

Last updated: August 10, 2024