Friends, family, and compassionate supporters,

We are reaching out today to share the story of a very special little girl, Harlee. Harlee has been diagnosed with an extremely rare genetic condition called CRIN1 syndrome (also known as Carnosine Dipeptidase 1 Deficiency). To give you an idea of just how rare this disease is, only about 75 people in the entire world are known to have it.

CRIN1 is a disorder that impacts the way the body develops and functions. It affects the nervous system, muscles, and often causes developmental delays, feeding and mobility challenges, seizures, and other serious medical complications. Because it is so rare, it is often misunderstood and under-researched, leaving families like ours with more questions than answers.

Despite the challenges CRIN1 brings, Harlee continues to show us her incredible strength and resilience every single day. She is brave, full of light, and deserves every chance at the best quality of life possible. But because this disease is so uncommon, the resources available to her are extremely limited. There is only one specialist in the entire United States familiar with CRIN1—and that doctor is located in Philadelphia.

As you can imagine, traveling for appointments, treatments, and ongoing care brings significant financial burdens. The cost of travel, medical expenses, therapies, and specialized equipment adds up quickly. Our family is committed to giving Harlee the very best, but we cannot do it alone.

That’s why we are launching this fundraiser. We are asking for your help in one of two ways:

1. Donations – Any amount, big or small, goes directly toward Harlee’s medical needs, travel to Philadelphia, and the care that can only be provided by specialists in this field.

2. Shirt Fundraiser – We are also selling shirts in Harlee’s honor, both to raise awareness for CRIN1 and to show her that she has a community standing behind her. When you wear one, you’re not only supporting Harlee—you’re helping shine a light on a condition that desperately needs more awareness and research.

This is about more than just one little girl—though Harlee is the reason we fight. It’s about giving a voice to the families impacted by rare diseases like CRIN1, and ensuring that children like Harlee receive the care, compassion, and opportunities they deserve.

Every share, every donation, every shirt purchased—it all makes a difference. If you cannot donate financially, simply sharing this fundraiser helps spread awareness and could connect us with others who may be able to help.

From the bottom of our hearts, thank you for standing with Harlee. Together, we can make sure she has the resources, the treatment, and the love she needs to thrive.

#CRIN1Awareness #RareButStrong #Harleestrong #heartsforharlee #Grin1

#itsamovement