AJ & Sean
AJ (6) and Sean (4) are two very special brothers. Their hugs, smiles, laughter and passion for life are contagious. Like many children, they love playing sports, watching movies, singing along to music, cuddling and hanging out with cousins. But unlike most children, these boys have a very rare condition that is shared by only 1 in every 70,000-100,000 people.
The boys' parents, Tracie and Jason, first noticed AJ wasn't speaking as well as his peers when he was about two years old. After nearly a year of speech therapy, the speech therapist thought AJ might have hearing loss since therapy wasn't providing the results they expected. Hearing tests showed that AJ had mild/moderate hearing loss. Two months later, the couple decided to have AJ's baby brother Sean tested as well. His tests also showed mild/moderate hearing loss.
Soon after, the diagnoses quickly started piling up. At age 1, Sean started having seizures and his hearing loss declined to moderate/severe. He can now only say less than a dozen words. At age 4, AJ was diagnosed with ADHD and ODD. Six months after that, he was diagnosed with Autism. Ultimately, the boys' parents decided to have genetic testing done to determine if there were other diagnoses they had not yet discovered.
On November 17, 2020, after blood and urine tests, it was confirmed that AJ and Sean had Sanfilippo Syndrome, a disease that has no treatment and no cure. Sometimes called "Childhood Alzheimer's," children with this condition typically gain skills as a normal child would until about age 2 when signs of developmental delay start to present themselves. Around age 4 children begin to regress, losing skills they've learned, forgetting how to talk, walk and eat, suffering seizures and passing away between the ages of 10 and 20.
"I remember the geneticist saying, 'I'm sorry, but there's nothing we can do,'" said Tracie. "This condition is so rare that even the boys' pediatrician had never heard of it before."
Cognitively, AJ and Sean have the understanding of roughly a 3-year-old. Although the boys can't understand their condition, AJ's Kindergarten classmates and Sean's preschool classmates understand that their friends need extra help, patience and love.
"AJ and Sean are such a blessing," said Tracie. "They have taught us and others to love more deeply, appreciate the time we have with loved ones, and think about what truly matters in life."
The family maintains a Facebook paged called "The Battle Is On For AJ & Sean" where they post updates on the boys and share their life experiences. In addition, they volunteer with the Cure Sanfilippo Foundation to raise money for a cure and treatments to help with daily life.
Despite their daily challenges, the boys and their parents are supported by countless friends and family members who are constantly checking in and sending encouraging letters and messages.
"Their support gives us strength to walk this journey," said Tracie. "We never would have thought this would be our life, but here we are. Everyone's time on Earth is short and the only thing we have control over is how we handle what comes to us, so love others and make the most out of what you've been given."
AJ and Sean look forward to cheering on the Cyclones!