<div>This is baby Jack.
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/100661883_1775106611462374_r.jpeg" width="100%" />
<div><br />
</div>
<div>He just got here, and he’s never made it home to his family. He’s never left the hospital. 
</div>
<div><br />
</div>
<div>He’s fighting 2 rare, life-threatening conditions, ebstein anomoly and Soto syndrome. Doctors can’t find another person like him. 
</div>
<div><br />
</div>
<div>His survival depends on heart surgeries and constant, specialized care to monitor his heart, breathing and glucose levels. His family can’t do this alone.
</div>
<div><br />
</div>
<div>If you're a parent, you know the feeling.
</div>
<div><br />
</div>
<div>The way your whole body relaxes when you hear your baby breathing at night.
</div>
<div><br />
</div>
<div>The way time stands still when something feels wrong.
</div>
<div><br />
</div>
<div>Right now, my brother and his wife are living every parent's nightmare.
</div>
<div><br />
</div>
<div>Their newborn baby is in the PICU.
</div>
<div><br />
</div>
<div>Their newborn son, Jack, was diagnosed with Ebstein's anomaly, a rare and serious congenital heart defect. As if that weren't enough, he was also diagnosed with Sotos syndrome; a genetic condition that brings its own set of complexities.
</div>
<div><br />
</div>
<div>Doctors have shared that the likelihood of a baby having both conditions together is estimated at 1 in 250 million.
</div>
<div><br />
</div>
<div>There is no playbook for this.
</div>
<div><br />
</div>
<div>Instead of being home bonding as a family of five, their days are divided between hospital machines and bedtime stories over FaceTime.
</div>
<div><br />
</div>
<div>Since birth, their baby has been intubated multiple times to help him breathe. He has already undergone two cardiac catheterization procedures, one heart surgery, and is will still need another heart surgery in the near future.
</div>
<div><br />
</div>
<div>There is no clear timeline for discharge. Every day is measured in oxygen levels, blood gases, and cautious hope.
</div>
<div><br />
</div>
<div>Because of the rarity and complexity of his case, world-renowned specialists from multiple parts of the country are
</div>
<div>collaborating on his care. His medical team is extraordinary, and they are fighting for him.
</div>
<div><br />
</div>
<div>But this fight is not just medical.
</div>
<div><br />
</div>
<div>Mom had a scheduled a C-section to the first baby ever born in their PICU, and is still recovering physically, yet she spends nearly 12 hours a day in the PICU, sitting beside her baby's bed, watching monitors, learning medical language no parent should have to learn.
</div>
<div><br />
</div>
<div>Dad is home holding everything together for their two other children, ages 3 and 6, trying to protect their sense of normal while their world has been turned upside down.
</div>
<div><br />
</div>
<div>They are living between hospital walls and home responsibilities.
</div>
<div>Between fear and faith.
</div>
<div>Between exhaustion and hope.
</div>
<div><br />
</div>
<div>And the financial reality is growing just as quickly as the medical one.
</div>
<div><br />
</div>
<div>-Extended PICU stay
</div>
<div>-Extensive labs, tests, and imaging
</div>
<div>-Heart procedures/ surgery
</div>
<div>-Future heart surgery in Pittsburgh
</div>
<div>-Speacialst consultations
</div>
<div>-Extensive respiratory support
</div>
<div>-Medications and IV therapies
</div>
<div>-Daily 30 mi travel back and forth
</div>
<div>-Insurance gaps and out-of-pocket costs.
</div>
<div>-Lost income
</div>
<div>-Basic living expenses during this unknown timeline.
</div>
<div><br />
</div>
<div>We are urgently raising $100,000 to relieve the immediate financial pressure so they can focus on what matters most, their baby's survival and healing.
</div>
<div><br />
</div>
<div>Right now, they should only be thinking about his oxygen levels and his strength.
</div>
<div><br />
</div>
<div>Not medical bills.
</div>
<div>Not how long this will last.
</div>
<div>Not how they'll bridge the gap.
</div>
<div><br />
</div>
<div>If you've ever watched your child sleep and silently prayed, "Please be okay," then you understand what this season feels like.
</div>
<div><br />
</div>
<div>If you are able to give - truly, any amount matters.
</div>
<div><br />
</div>
<div>Their baby is 1 in 250 million.
</div>
<div><br />
</div>
<div>Let's surround him with support that feels just as extraordinary.
</div>
<div><br />
</div>
<div>Jack’s story has received overwhelming amount of support, both locally and nationally by Good Morning America and ABC News.
</div>
<div class="youtube-replace"><br />
</div><iframe media_type="0" media_id="9VzfUgZbqo0" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/9VzfUgZbqo0/?rel=0" frameborder="0" allowfullscreen="1"></iframe>
<div><br />
</div>
<div>We’re so grateful for all the support so far. With no sign of a discharge date, your donations help more than words can express.
</div>

Anonymous

Kiara Humphries

Marc Ruppert

Holden Anderson

1 in 250 Million Diagnosis- Help Jack Keep Fighting

Still $67,083 to go. Help us build momentum.