Happy birthday Ashlyn!
In North Carolina, Ashlyn celebrated her 7th birthday and is Casey Cares' 170th 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.
Morquio Syndrome
Ashlyn was diagnosed at 2 years old with Morquio Syndrome, also known as Mucopolysaccharidosis Type IV (MPS IV), is a rare metabolic disorder that causes skeletal dysplasia due to the body have little or no glycosaminoglycans.
“She was tested due to the fact that two of her siblings had also been diagnosed. Due to such an early diagnosis, she was able to start enzyme replacement therapy by 8 months old,” says Carrie, Ashlyn's mother.
Carrie adds, “Several years ago, Ashlyn was diagnosed with autism as well. While this is completely separate from her Morquio diagnosis, she is now talking much better than she was.”
The Family + Casey Cares
The family was introduced to Casey Cares via one of Ashlyn’s siblings, Ember. Ember, age 8, was the first to join Casey Cares in 2018 after also being diagnosed with Morquio Syndrome; she continues to be in Casey Cares programs.
Carrie appreciates how Casey Cares has provided “us with games, pajamas, movie night packages, store gift cards, birthday gifts, and more.”
After joining Casey Cares in 2018, Ashlyn’s favorite activity was visiting Jellystone Park, Hershey Park, and Dutch Wonderland, as part of Celebration Vacation, a former Casey Cares program.
Carrie states, “The kids always had a blast. They loved staying at hotels, just as much as visiting the parks. Our favorite part was just getting out and seeing and doing different things, away from weekly infusions.
The mother acknowledges the struggles that arise as a parent of critically ill children.
She states, “The biggest challenges that we face, having multiple children who have this condition, is trying to keep a normal routine even with the weekly infusions and many doctors appointments. Since COVID started, our biggest challenge has been getting back to normal while taking all the precautions to keep the kids well.”
Today, Ashlyn is a bright young girl. “She loves singing songs. She had hip and leg surgery in September [2022] and it took several months and some physical therapy, but she’s finally walking normally again,” Carrie concludes.
You can help critically ill children (like Ashlyn!) and their families make lasting memories - click here!