Help Our Baby Girl Fight for Her Future

Hi, we're Tavia and Richard, and we're asking for your help as our family faces the biggest challenge of our lives.

Our sweet daughter has been fighting since before she was even born.

Halfway through my pregnancy, we learned she was high-risk because the blood flow from my placenta through the umbilical cord wasn't as strong as it should have been. We prayed every day that she would stay strong, and at 35 weeks and 3 days, she made her entrance into the world.

Her fight began immediately.

She spent her first month of life in the NICU, where she was critically ill. During that time, she needed two chest tubes, two blood transfusions, and constant specialized care. We also learned that her body cannot break down the proteins in breast milk, so she relies on a specialized formula that is essential for her health.

We hoped that once she came home, things would finally get easier.

Instead, just a month later, our lives changed again.

A visit with her gastroenterologist raised concerns about her liver enzymes. After several days in the hospital, we were transferred to Primary Children's Hospital, where doctors were almost certain she had biliary atresia. They prepared to perform the Kasai procedure, believing it would be the answer.

But during surgery, everything changed.

The surgeons discovered that she didn't have biliary atresia. Instead, they found that she has Abernethy malformation, an extremely rare congenital condition affecting the blood vessels connected to the liver. During that surgery, her gallbladder was removed, and doctors discovered that her liver had already been severely affected. She also required two more blood transfusions during this hospitalization.

We later learned that this rare condition also affects her heart and that the only long-term treatment is a liver transplant.

As if that wasn't enough, genetic testing revealed that she is missing part of chromosome 15 (15q25 deletion). This rare chromosome deletion affects her growth and has led to additional medical complications, including Diamond-Blackfan anemia, a condition that prevents her body from making enough healthy red blood cells.

Because of this, she has already needed five blood transfusions in her short life, with another one just last month. As she gets older, she will likely need lifelong steroid treatment to manage her condition, and she will require ongoing monitoring because her diagnosis increases her risk for certain cancers.

Today, our daughter is only 4½ months old and weighs just 8 pounds, 12 ounces.

Despite everything she has endured, she continues to amaze us with her strength. Her smile reminds us every day why we keep fighting.

Our family now spends more time in hospitals and doctors' offices than we ever imagined. Between specialists, medications, expensive specialty formula, travel, and preparing for the liver transplant she desperately needs, the financial burden has become overwhelming.

On top of caring for our medically complex daughter, we're raising our other child while both going to attend school and working full-time to build a better future for our family.

We're not asking for an easy road—we know this journey will be lifelong. We're simply asking for help so we can focus on what matters most: giving our daughter every chance to live a healthy, happy life.

Every donation, no matter the amount, will help with medical expenses, travel for appointments and her transplant, medications, specialty formula, and the countless costs that come with caring for a child with complex medical needs.

If you're unable to donate, we completely understand. Sharing our story and keeping our daughter in your prayers means more than words can express.

Thank you for taking the time to read our story and for standing beside our family. Your kindness, generosity, and prayers give us hope as we continue fighting for our little girl's future.