Happy birthday Lainey!
In Maryland, Lainey celebrated her 3rd birthday and is Casey Cares' 784th birthday this year!
Casey Cares knows that for a critically ill child, each birthday is a special milestone celebrating life. For the children in our programs, it not only marks another year, but it also demonstrates a great achievement. Casey Cares staff and volunteers work hard to send out each of our kids a special birthday package through our Birthday Blast program - we send over 1,000 a year! This simple act of kindness delivers joy and hope to our kids who are undergoing treatment.
Lainey's Journey
Ashley, Lainey’s mother says, that it took 4 months for her daughter to be diagnosed.
"Within hours of being born, Lainey started vomiting and was admitted to the NICU at St Agnes; and was then transferred a couple days later to University of Maryland. She was discharged without a diagnosis; however, we were right back in the ER 2 weeks later when Lainey was septic and without a pulse. After multiple antibiotics and tests, she was discharged, again, without a diagnosis. Our hospital visits were frequent for the next couple months due to belly distention and vomiting. It wasn't until she was 4 months old that Dr. Strauch at University of MD came to see Lainey for a surgical consult," Ashley explains.
She stresses that it "was him that finally listened to me and saved her life. I had been asking other doctors for a rectal biopsy, and he was the only one to agree. That rectal biopsy came back as Hirschsprung's disease. She was taken to surgery 2 days later, where they discovered she had Total Colonic Hirschsprung’s Disease, and her entire colon was removed that day."
After a complicated route to Lainey being diagnosed, Ashley shares difficulties of being a parent to a critically ill child, especially “the unknown and fear of reliving what you've already experienced."
She states, "Lainey's first pull-thru surgery was unsuccessful; so she went back to an ileostomy in January 2024. Children's National is confident that they can do a successful pull-thru surgery, which she will have in January 2025. This is so scary for my family, because Lainey was constantly in the hospital with enterocolitis with the first pull-thru. Getting the second opinion from Children's National helped us navigate, because they had the same opinion as University of Maryland. And coping-wise - it's a lot of prayer, counseling, and being with our friends and family for support."
Helping Families Feel Seen
Lainey joined Casey Cares programs in early 2024 after her ileostomy and has received new pajamas, Movie & Pizza Night packages, trips to the ballet and National Aquarium, attended a royal ball, and more.
“My favorite experience would have to be the Children's National Museum in DC. We were in DC visiting Children's National Hospital to get a second opinion on Lainey - an incredibly nerve-wracking experience. To be able to go to the Children's Museum after our visit was a breath of fresh air. Lainey had such an incredible time, running, playing, and exploring - it took my mind off the visit and everything that was discussed,” says Ashley.
Ashley, "appreciates Casey Cares because they make me feel seen. They make me feel like our family is seen. Sometimes you feel like you're on an island when trying to navigate life with a child that is chronically ill and in the hospital all the time. I have so much support from friends and family; but the support from Casey Cares is from people and other families with the same day-to-day struggles. And the fact that Casey Cares includes the other siblings is such a blessing. I feel like my oldest gets lost sometimes in all that has happened with her sister. Casey Cares sent her and her friend to the Broadway show, Clue. She was so appreciative, and thought it was such a cool experience. I know it meant the world to her to be included."
As Lainey turns three, her birthday will be a roaring celebration with an exciting outdoor "Three-Rex" party!
“Lainey's favorite things are camping, swimming, and animals! So we will be spending the weekend at our camper with friends and family in Gettysburg. Our campground has a pool, so we will be spending lots of time in the pool, playing with her friends on the playground, and having a "Three-Rex" party Sunday night with cake, a pinata, games, and an outdoor movie. We will also be taking a horse drawn carriage ride in Gettysburg on Saturday,” Ashley states.
Want to support more programs and fun activities for critically ill children like Lainey? Donate here!