Having our third child, we thought we understood parenting. We were soon proven wrong. Our journey with rare diseases started three days after our son, Miller, was born.

In the hospital, we noticed some abnormal spit up and trouble feeding, but the doctors didn’t seem too concerned. Once we got home, he wouldn’t wake up for his night feeding and was breathing extremely fast. Our pediatrician said to call 911, so we rushed him to the ER. When we arrived, they immediately took us to the trauma room and started running tests. Joey and I were scared out of our minds. Around 9am, the doctors told us that his ammonia levels were off the charts and we needed to call family and friends if they wanted to meet him. It is impossible to describe the level of panic that rushes through you when you hear something like this. We were told his best chance was at Levine Children’s Hospital. After a few rounds of dialysis and a miracle overnight diagnosis from Duke, he stabilized and we were sent home to learn what it meant to manage a child with a rare disease. Miller was diagnosed with a rare genetic disorder - Arginosuccinate Lyase Deficiency (ASA Lyase) - which means his liver does not make the enzyme required to break down protein.

With the love and support of Miller’s doctors, our families and friends, Miller is thriving. Although his condition is associated with developmental delays that he will always have, for the most part Miller is a regular 6 year old. He is hilariously funny, very kind and thoughtful, and the bravest boy you’ll ever meet.

Since that first day at Levine Children’s Hospital, we have coordinated his protein intake, daily medications, and the variety of specialists that are required to manage a rare disease. Above the daily management, there are so many more challenges – fighting with insurers, getting the government to provide medical formula, refilling medications, picking up medications, scheduling doctor’s appointments, traveling to specialists and the list goes on. All of this is why we want to support WARD'S Foundation. We have been fortunate enough to have great specialists, a world class children’s hospital in Charlotte, access to resources, and supportive friends and families. Not every family has the same access, which is where WARD'S Foundation can help. Living with a rare disease is overwhelming, exhausting and scary. WARD'S mission is centered around providing information, resources and connections to help families under the most challenging of circumstances. We are so grateful for WARD’S Foundation!