Happy birthday Nylah!
In DC, Nylah celebrated her 9th birthday and is Casey Cares' 960th 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 to Learn and Grow
Casey Cares provides activities for critically ill children and their families to enjoy! Since joining our programs in 2020, Nylah has gone to a Baltimore Orioles game, saw the thrilling UniverSoul Circus, enjoyed Movie & Pizza Night packages, watched the dancers at a Nutcracker ballet, and more!
"Allowing our family to engage in certain activities such as plays, concerts and the aquarium which Nylah loves so much," mom Shantice says about her daughter's favorite activity.
"Charlotte the dolphin at the National Aquarium is her favorite and thanks to Casey Cares for allowing her to see the different animals and to learn about each species," she shares.
Shantice loves "how Casey Cares offers our family a peace of mind. Making families like ours feel at a ease when our little ones see something they like on TV or YouTube and but sometimes finances are in the way to enjoy the little fun things in life, such as the Maryland Science Center, or Disney on Ice, and the Aquarium. Casey Cares just makes it more of a joyful experience for how well they take care of us, whenever we participate!"
A Diagnosis She Didn't Want to Hear
"If I would’ve known that on October 31, 2019, that we would go to bed and wake up the next day November 1, 2019, for an appointment with a neurologist, knowing what I knew then, I honestly would’ve rather stayed sleep," states Shantice.
On that day, Nylah was diagnosed with Anaplastic ependymoma, a fast-growing cancer that develops near the base of the brain.
"At the time she was just 5 weeks shy of her 5th birthday, she often complained about having headaches. A previous doctor that she was seeing made it out to be normal and it wasn’t. When we found out through an MRI, that she had a brain tumor on November 1, 2019, my heart skipped several beats. I wanted to make sure I completed heard that news that 2 doctors just had given me," Shantice expresses.
Her mother continues, "Four days later Nylah, had an 8 hour surgery to remove 99% of the tumor. One month later she started 30 rounds of radiation and followed by 4 rounds of chemo. I was devastated because I couldn’t explain to my baby what was going on, in a way that she would understand at such a young age."
As she watched her daughter undergo harsh chemo treatments for the tumor, Shantice found her own strength to support Nylah. "Slowly after her second round of chemo, Nylah became very light in weight and started to lose her hair, she cried so bad and I had to find the courage to tell her that everything happens for a reason, and unfortunately you were chosen to fight one of the biggest fights in life," she says.
"Nylah has been through countless blood transfusions and clinic visits. She then began occupational therapy to help her gain her strength and balance back, it took a year for her to be able to walk and stand without losing her balance, and to even run with her peers again. This journey was a gift in a curse but all in all we are grateful to still have Nylah here, to celebrate her 9th birthday!"
As A Parent
As a parent with a critically ill child, Shantice found that a huge challenge for her was "having to sacrifice my job at the time, just so I can be there for my child every step of the way. When Nylah was in the hospital for 10 days after surgery I didn’t sleep. Some other challenges are not knowing if treatments would work, to help manage the cancer, not knowing the long term effects each medication would have on such a small child."
She conlcudes, "I found that Nylah’s biggest challenge was accepting her temporary appearance, being super skinny and having no more curly locs for a while. But now I can say she’s one of the happiest kids I know and I admire her for staying strong through it all."
Today, Nylah's favorite thing to do is be by the water as she says she feels at peace whenever she can swim or go to a beach.
Want to bring some birthday joy to children like Nylah? Donate here!