(The following is shared by HI parent Felicia Huffman:)
When my daughter, Jilani Rose, was diagnosed with congenital hyperinsulinism (HI) as a baby, our world changed overnight. She underwent a 98% pancreatectomy — a lifesaving procedure that came with a lifelong consequence: the development of insulin-dependent diabetes. We’ve come to view this transition through both a heartbreaking and hopeful lens. It was a profound and life-altering change, one I hated learning she would have to face. But she has embraced it with a strength that inspires me every single day.
Jilani shares that living with HI is far from easy or convenient. “From the second I wake up, I have to deal with my sugar for the entire day,” she says. “Everything I do is either going to affect my sugar, or my sugars are going to affect it.” Despite this daily challenge, Jilani chooses to remain positive, reminding herself, “I am blessed, I am unique, and I’ve got this.” Her courage is a daily reminder that while HI can feel overwhelming, it doesn’t define who she is — she is the main character in her story, and I want all children living with HI to feel this same way and know how amazing they are.
When we discovered Continuous Glucose Monitoring (CGM), everything changed. CGM isn’t just a tool; it’s our safety net. Real-time readings mean we can see trends, catch lows before they become dangerous, and give Jilani the confidence to explore her world. That immediate feedback eases the emotional strain of managing a chronic, life-threatening condition. It allows her to play outside for hours, have sleepovers and enjoy that candy salad with her friends, and travel and see the world!
Before CGM, her access to data and access to trends was limited and delayed. But HI doesn’t wait. It doesn’t always give you time to guess or observe. CGM gave us something we didn’t have before — the ability to act quickly and confidently. When Jilani was younger, she wasn’t symptomatic — she couldn’t tell us how she felt, and this meant 10+ fingersticks a day. Having access to her glucose trends through her Dexcom was life changing. And as she’s grown, she’s started recognizing her own symptoms. Now she can look at her CGM and say, “Yep, that’s why I am starting to feel funny, I knew that low was coming,” and stay one step ahead. That connection between body awareness and data has been a powerful part of her learning and independence.
Our story is also a testament to the importance of awareness and advocacy. Jilani’s life was saved within her first 48 hours after birth because I noticed something was off and battled the nursing staff on more testing because unfortunately blood glucose isn’t yet considered a vital sign and desperately needs to be (something CHI is working on!)! I didn’t know what HI was at the time or that this had been carried down genetically in our family line, I just knew something was wrong. I had to fight for her, and she has never stopped fighting for herself since. Many families are not so fortunate. That’s why education about HI is so critical — so that more children can be diagnosed and treated as early as possible.
But our journey is not just about managing HI and diabetes—it’s about sharing our experiences to shape future care. That’s where the Hyperinsulinism Global Registry (HIGR) plays a vital role. HIGR is a global effort to collect real-world data on HI — from how it presents, how it’s treated, to how families like ours manage daily life. This data turns into knowledge that drives better care, fuels research, and gives hope for new treatments.
Jilani is only 11 years old, and sometimes she reflects on how mind-blowing it is to have started life producing too much insulin, only to now face the challenge of injecting it multiple times a day. But she holds onto hope: “I can only hope that in my lifetime we change the storyline.” Funding for research and new treatments is vital, and I am proud to be an ambassador for HIGR, working to change outcomes for children like Jilani worldwide.
To every family navigating HI, diabetes, or both: your story matters. Tools like CGM offer safety and clarity. Platforms like HIGR offer purpose and connection. And when we come together and share, we build a better future — not just for our own children, but for families around the world.
And as Jilani says: “If you’re wondering when to join the fight with CHI — there’s no better time than now.”
With Gratitude and (HI)Hopes –
Felicia Huffman
