Angels Spotlight- Lane & His Nurses
Lane was diagnosed with Full Trisomy 18 at 3 days old. This means he was born with a 3rd copy of his 18th chromosome in every cell of his body. We were told the diagnosis is considered ‘incompatible with life’, and were told to take him home to die. Well…Lane just kept getting stronger through the months and years. We learned through finding other families with the same diagnosis that there is a spectrum of severity, similar to Down syndrome (aka Trisomy 21). Lane is also living with a heart condition because he was denied surgery due to his diagnosis.
The hardest part of our journey with Lane has been finding a medical team to help, yet having him in our lives has been the biggest blessing. He’s taught our family to work as a team, and we actively build memories because we don’t know how long he’ll be with us. Lane was born with a pure soul, and his constant smile makes every day awesome. My husband and I pay it forward for other trisomy families with our non-profit, Hope for Trisomy. We bring awareness to the diagnosis, and help families by giving them the knowledge to make the best decisions for their family. We also send them adorable blanket bears to cuddle during their trisomy journey.
It has been the help from our awesome nurses at Angels of Care that have helped us keep Lane as healthy as possible to make it to 8 years old! Two of those special nurses are Cathy Oja and Priscilla Chavez!
Cathy Oja (aka Mimi) was introduced to us through a hospice company when Lane was 5 months old. When we started receiving nursing hours when Lane turned 8 months old, she followed us so that she could continue to help take care of our baby. Cathy started out as our night nurse so that we could get quality sleep, but for the last few years has been our day nurse. We’ve had the privilege of her being a part of family for almost 8 years now! She is the sweetest person with a heart of gold. Cathy went on our WISH trip, traveled to Houston to see Lane’s PH Specialist, met former Senator Rick Santorum (who also has a daughter with Trisomy 18), and she went to Galveston with us so Lane could experience the ocean. She’s been a huge part of our journey, and we wouldn’t be where we are today without her!
Priscilla Chavez has been with our family helping to take care of Lane for almost 2 years. She is also known as ‘Lane’s girlfriend’! He gets so excited when she walks through the door. Priscilla is our weekday night nurse and has become the gift that gives us a good night’s sleep. We know that Lane is in the best hands with her. Priscilla also went with us on our last trip to Houston for Lane to see his PH Specialist, and was a part of Lane’s experience in Galveston to see the ocean. She has gone over and beyond for Lane and our family!
-Alisha Hauber, Lane’s Mother.