<p>Harper is our sweet, strong little girl who faces something most people have never even heard of: Capillary Malformation-Arteriovenous Malformation (CM-AVM) syndrome, caused by a RASA1 gene mutation.

CM-AVM is a rare vascular condition that causes abnormal connections between arteries and veins throughout the body. For Harper, this doesn’t just mean a diagnosis—it means living with daily pain, swelling, bleeding, and the constant risk of complications that can affect her muscles, nerves, heart, and even her brain or spine if left untreated.

As parents, we’ve done everything we can to find the best care for her here in the United States. We’ve met with specialists and explored every option available to us. Unfortunately, the treatments offered here carry significant risks, including permanent damage to muscles and nerves, and they are not the treatment Harper needs.

After consulting with world-renowned vascular surgeon Dr. Giacomo Colletti, we finally found hope through Modified Electrosclerotherapy (MEST), a specialized treatment currently only available through his team in Italy.

Our journey began with the hope that Harper would only need one treatment. Since then, we’ve learned that her case is more extensive than originally anticipated. Harper will now need two MEST treatments in Italy, and there is also a possibility that she will require a third trip for surgery, depending on how her body responds. Each treatment must be spaced months apart to allow time for healing and to evaluate the results before moving forward.

Before her first procedure, we will travel to New York City in October to attend a specialized vascular anomalies “Super Clinic,” where Harper will undergo additional imaging and be evaluated in person by Dr. Colletti and an international team of specialists. Her first treatment in Italy is scheduled for November 26th, Thanksgiving Day.

This journey comes with an overwhelming financial burden. Every trip requires international airfare, lodging, transportation, meals, medical expenses paid entirely out of pocket, and time away from work. What we once believed would be a single trip has now become the possibility of three separate international medical journeys for our little girl.

Because of these unexpected changes, we have increased our fundraising goal to $180,000 to help cover Harper’s ongoing medical care, multiple trips to Italy, and the possibility of surgery.

Along this journey, we’ve connected with families from across the United States—and around the world—who are facing the same heartbreaking reality. Many have been told there are no treatment options available here and have had to fight to raise the funds to travel overseas for care.

We are sharing Harper’s story not only to ask for help, but to raise awareness for CM-AVM syndrome and advocate for treatments like MEST to become available in the United States. Families shouldn’t have to leave their country, empty their savings, or rely on the generosity of strangers to give their child access to life-changing medical care.

If you feel led to donate, share Harper’s story, or simply keep her in your thoughts and prayers, we are deeply grateful. Every donation, every share, and every kind word brings Harper one step closer to a future with less pain and more opportunities to simply be a little girl.

Thank you for standing beside our family and for being part of Harper’s journey. Your support means more than words can ever express.<br />
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Anonymous

Richard Layden

Nick Stokes

Aryan Reddy Kalluri

Daniela Kranzer

Linda Gerber

William Washburn

Alex Flangos

Mananpreet Singh

Help Harper Get Life-Changing Treatment

Help Harper Get Life-Changing Treatment

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