WALDORF, Md. – Preston Hugh, diagnosed with Aplastic Anemia and autoimmune hepatitis, will be celebrating his 12th birthday on February 27th. He will receive a special package filled with an Under Armour drawing string bag and other treats for his birthday thanks to the Casey Cares Foundation.
Preston will be Casey Cares’ 118th birthday celebrated in 2023.
Casey Cares provides ongoing, uplifting programs to critically ill children and their families. 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 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.”
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.
“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 at Unity Church in Lexington Park.
The book was “therapeutic” for Lisa because she learned about “his feelings and memories for his diagnosis along with the people who helped him.”
The book also helped Lisa 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 [University Hospital].
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.
Since Casey Cares began counting in 2001, Casey Cares has given over 10,000 birthday packages to kids.
“Our birthday program is especially important to us because we know how critical each birthday is to children who are fighting for their lives every day,” says Casey Cares Founder and Executive Director Casey Baynes.
WHO: Preston Hugh, age 11; mother, Lisa Hugh; father, Eric Hugh; brother Niles
WHAT: Preston’s 12th birthday with Casey Cares gift
WHEN: Monday, February 27, 2023, is Preston’s birthday
MEDIA NOTES: Media is free to interview Preston’s mother Lisa over the phone, in-person, or by email. Email, photos, and phone numbers for the family can be given upon request. Casey Cares Deputy Director, Erin Ritter is available for virtual interviews upon request.
I worked as a social worker in Hematology at The Children’s Hospital of Philadelphia in the early days during the discovery of this disease, Aplastic Anemia and witnessed the early pain and struggles of families and physicians. While I realize that the struggle is still real, I am so happy that children are able to live to such unimaginable age today with treatment! God bless and keep all who support these families! Grace Gaston, MSW,LSW