In 2011, my sister Mary was diagnosed with Hypoplastic Left Heart Syndrome with a completely Intact Atrial Septum.

When you google "Hypoplastic Left Heart Syndrome With Intact Atrial Septum," the first article you find says, "hypoplastic left heart syndrome (HLHS) with intact or very restrictive atrial septum (IAS) is a highly lethal combination." The second article says, "the Children's Hospital of Philadelphia group published sobering results in 2007, highlighting the lethality of HLHS/IAS with 30-day survival of 38% despite emergent postnatal intervention." 

After the diagnosis, the doctors in Chicago said nothing could be done, and Mary would die in a few weeks or months. They said to the extent she survived, she would have significant brain, heart, and lung problems. They said there was only an "experimental" procedure at Boston Children's.

So in 2011, we loaded into our Honda Odyssey and drove from Chicago to Boston. The team at Boston Children's agreed that Mary faced very long odds. But they gave us hope and courage. Boston Children's is hope.

From the moment she was diagnosed, Mary's survival has been minute-to-minute. Mary had in-utero surgery when her heart was the size of a grape. Since then, she has had six open heart surgeries. She's faced significant challenges throughout. But Boston Children's has been with us at every step. When Mary had difficulty with feeding, Boston Children's fit her with a feeding tube for her medications and food. When Mary had casts that clogged her lungs and suffocated her, Boston Children's guided her to a procedure to make it easier to breathe. When she had a heart attack, she was put on a heart-lung bypass that kept her alive until the next surgery.

Because of Boston Children's, Mary has been able to make the most of her life. She loves dancing and sewing. She is a huge Chicago Bulls fan.

Boston Children's amazing team for my sister included Dr. Wayne Tworetsky, Dr. Jenifer Lightdale, Dr. Sitaram Emani, Dr. Louise Wilkins-Haug, Dr. Audrey Marshall, Dr. James Lock, Terra LaFranchi, NP, and many, many others.

To raise money and awareness for HLHS and Intact Atrial Septum, I am hiking the American Discovery Trail from Chicago to the Atlantic Ocean. My hike has already covered hundreds of miles of trails in Illinois, Indiana, and Ohio. So far, I've hiked the Old Plank Road Trail and Pennsy Greenway Trail in Illinois; the Erie Lackawanna Trail, Erie and Monterey Trail, Sweetser Switch Trail, and Cardinal Greenway Trail in Indiana; and the Riverwalk in Cincinnati, the Ohio River Trail, and the Buckeye Trail in Ohio. I have been hiking every weekend this year and during breaks so I don't miss school. I have also hiked through Ohio during Spring Break. The goal is to raise money to help Boston Children’s continue its amazing work for kids.

Here is a link to learn more about the American Discovery Trail: https://en.wikipedia.org/wiki/American_Discovery_Trail

Every dollar I raise funds breakthrough research, family supports, and vital services not covered by insurance. Your gift will:

• give children battling the most complex diseases treatments they can't find anywhere else;
• help children in your town and those across the world get a second chance;
• fuel 3,000+ researchers working to find cures;
• help patient-families in crisis with urgent needs, including housing, food and clothing;
• bring crucial care to families through not 1, but 4 outpatient psychiatry clinics;
• and so much more.

And the hospital doesn't just stop there. Boston Children's truly understands the importance of training the next generation of top pediatricians and nurses, so they can continue to provide the best, most innovative care possible to kids.

Please support my fundraiser—and Boston Children’s Hospital.