Happy birthday Jackson!
In Florida, Jackson celebrated his 6th birthday and is Casey Cares' 60th 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.
A Rare Diagnosis
Jackson is diagnosed with a rare syndrome that occurs in 1 in 810,000 individuals called has CFC Syndrome. CFC Syndrome typically affects a child’s heart, facial features, and skin, and most will also have a heart defect and some degree of learning difficulty and developmental delay.
Having CFC means that “Jackson has 24-hour nurses for his care,” says Jackson’s mother, Iman.
It’s A Family Effort
Jackson’s family is full of heroes: his mother is a nurse and his father, Samuel, is a firefighter.
Being a nurse did little to calm Iman about her son’s diagnosis. Iman felt she “knew too much” going into Jackson’s diagnosis.
Jackson was first diagnosed at the Children’s Hospital of Philadelphia (CHOP) before the family moved to Orlando. As many parents and caregivers to a critically ill child can realte, “it has been hard for the entire family,” Iman states.
She continues, “Jackson’s younger brother Jude wants to play with Jackson but doesn’t understand all of it.”
When Jackson was 18 months old, he had a health scare. “Jackson stopped breathing while I was at home,” says Iman. “I did CPR. There was brain damage and he got a trach put in place."
Those Jackson still has certain challenges, Iman is happy to say that "his seizures have gotten better and he’s made improvements thanks to therapy.”
Casey Cares Brings Positivity to All
However, thanks to activities provided by Casey Cares free of charge, the family, especially Jude, have loved going to all the activities the nonprofit has provided, such as going to Paw Patrol Live and Jurassic Quest.
After one visit to Monster Jam, “Jude now loves the Grave Digger,” says Iman.
Iman states that Casey Cares is great in providing help “because we can always take Jude [to activities] if Jackson cannot come.”
A Learning Opportunity
Above all, Iman wants, “people to know more about his [Jackson’s] diagnosis.” Learn more about CFC Syndrome here: https://www.cfcsyndrome.org/