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.

Caroline Cheevers, Mom of Justin, Tyler, and Hailey Cheevers, was thrilled when she found out that her son Tyler and their family had received a Make-A-Wish trip to New England. She was excited, but with all three of her children having special needs, she could not help but worry. Read why Mom was able to rest easy and the trip turned out to be a total success.

“When my older son Tyler was granted a Make A Wish trip to New England, Luke jumped at the chance to come with us….paid or not. He volunteered to come either way, as did our other fabulous day nurses, Veronica Thomas (Tyler’s nurse) and Kirby Stoloroski (Hailey’s nurse). They wanted to be part of this with them and see them experience so many of their ‘firsts’.”

“Tyler and his nurse Veronica have been together for 3 1/2 years and is “Aunty V” to Tyler!   He adores her, and Veronica loves him right back!   We knew Veronica from working with our older child who passed away 4 years ago. She came back to us when Tyler came home, and is an integral part of the family. She came along with us for Tyler’s trip without a second of hesitation, volunteer or paid, she was coming!! She and Tyler have an incredible bond, and it’s visible when the 2 are together. Veronica ensures Tyler’s high medical needs are cared for while meeting his strong desire for love and affection.

“The picture of Justin & his nurse Luke was taken while visiting Salem Massachusetts and walking through a 300+ year old cemetery. We noticed this guy dressed in Zombie attire by a large grave stone and initially thought it was a statue…it wasn’t! It was a 65 year-old gentleman who dresses up for photos with tourists. We took this picture, fully expecting a “not so sure” response from Justin, who actually thought this zombie was the funniest thing on the planet at that moment. Thankfully, Luke had a good handle on Justin, who would have kicked his way out of Luke’s arms had he not. The harder Justin laughed, the more Luke (and all of us) laughed…even the zombie guy couldn’t keep a straight face! We had a great time!!”

Kirby is new to our family, having come in august when one of our regulars went on maternity leave and fits in so well with our family!  She works with boy Tyler and Hailey, and while on this trip, she was Hailey’s day nurse.  Hailey requires close attention to detail with her medical needs, and Kirby has been tested, and passed.  While Hailey is learning about herself, waking from a persistent vegetative state, Kirby provides the support she needs and they both enjoyed touring Salem and the trip to Maine. I think Kirby even cried seeing the Nubble light house!!

The nurses helped us so much with all 3 kids, working well together and anticipating the kids’ needs. Because of them my husband and I were able to enjoy the trip with them and just have fun! The opportunity to work with these nurses and have them be so much more than “just” my kids’ nurses, but an extension of our family. The kids adore their nurses, and Luke, who has only been here 3 months, is Justin’s best buddy! They laugh and giggle together while I’m at work, and I know the kids are in great hands while mommy is away. Being away from them all day is tough on me, but these nurses make it a lot more bearable knowing they are well cared for and loved.” -Caroline Cheevers