Happy birthday Preston!
In Southern MD, Preston celebrated his 12th birthday and is Casey Cares' 118th 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.
Activities No Matter What
After joining Casey Cares in 2021, Preston and his family have loved receiving their Movie & Pizza Night Packages. The care packages are filled with a grocery store gift card, gift cards for a movie rental and pizza delivery, candy, and popcorn for a cozy family night.
Preston’s mother Lisa says that “[Casey Cares programs] are such a positive encouragement.”
“Though it has been a lot of work,” Lisa states, “As a parent, the activities helps fill in the gaps of the doctors’ appointments, rescheduling, and calling.”
She adds, “It was encouraging to still receive emails for activities even when we couldn’t go.”
The Unknowns
The strenuous journey to Preston’s diagnosis was filled with constant unknowns and shifting diagnoses.
Lisa notes that in July 2021, “Preston just wasn’t feeling well, saying that his stomach hurt and such. Then, he started to developed jaundice and we immediately took him to the ER for an evaluation.”
“The doctor diagnosed him with acute liver failure and put him on an ambulance to [Medstar Georgetown University Hospital],” she says.
“There was a continual process for his diagnosis,” the mother states. “His clinical presentation kept changing and it took many months with visits to various specialists and bloodwork draws.”
Preston was finally diagnosed with aplastic anemia and autoimmune hepatitis.
Lisa expresses, “After Preston’s diagnosis happened, our lives changed. That uncertainty was around for a long time. At point during his second wave of illness, there was a possibility that he needed a bone marrow transplant.”
Today, Preston has seen substantial progress. He is not showing symptoms for his autoimmune hepatitis and still went to school, albeit virtually, for a year during his hospital stay for treatment.
Preston - The Caring Author
“He loves Legos and building things, muscle cars, drawing, Hot Wheels, cooking brownies and noodle dishes, and creating different beverages,” Lisa states.
Now almost a teen, Preston does still “struggle with the balance of keeping his story private and sharing it so other kids like him feel more comfortable,” Lisa says.
When Preston began dictating his story that his he realized he could turn it into a book to share with other kids; the book later became “Preston Hugh Gifts” and published on Amazon.
Preston even had a book signing event! The book was “therapeutic” for Lisa because she learned about “his feelings and memories for his diagnosis along with the people who helped him.”
Often overlooked, parents of critically ill children often face their own traumas over their child's diagnosis and medical care. Through the book, Lisa was able to process “some things” regarding the challenges of medical care and parenting of a critically ill child.
Lisa concludes, “Preston always wants kids like him to feel encouraged. He’s never had a feeling of taking things for granted and wants others to feel good too.”
“Preston wants to look to the future and give to others like the programs that supported him,” she ends.
In fact, Preston crochets scarves and donates them to patients in the hematology clinic at Georgetown.
You can help critically ill children like Preston like through Movie & Pizza Nights - click here!