This summer Caleb, his mom and grandmother traveled from Minneapolis, MN to the Ronald McDonald House of Fort Worth to treat his Wolff Parkinson White Syndrome, Cerebral Palsy and Duchenne Muscular Dystrophy. Leaving Caleb’s dad and three brothers at home, the three awaited Caleb’s cardiac ablation surgery at the House.
Quickly, the House became a safe place for the Kasner family as Caleb would have to be off his medications prior to the surgery. Meaning, he likely could experience a debilitating heart episode. Mom says, “… it was perfect being so close to the hospital. We felt safe.”
Wolff Parkinson White Syndrome is characterized by an extra pathway between the upper and lower chambers of the heart which causes a rapid heartbeat. This can cause serious heart problems, and can be permanently corrected with a catheter-based procedure.
Caleb’s Medical Backstory…
Caleb was born with Wolff Parkinson White Syndrome, a rare heart condition that causes rapid heartbeat, on October 28, 2013. The Kasner family expected the condition would be the only medical indifference their son would have to fight; however, after Caleb was not crawling or walking at 18 months, they began to worry something more could be wrong.
Mom says, “I always thought something was off.” Caleb’s local doctor, unconcerned something serious was impairing Caleb, referred the Kasner family to physical therapy.
Duchenne Muscular Dystrophy is a genetic disorder that causes a lack of a protein called dystrophin, which is primarily responsible for keeping muscle cells intact. The absence of this protein causes muscle weakness and degeneration.
After a few weeks of physical therapy, Caleb was up and walking, but his mom still worried about his abnormal gait—he couldn’t walk up stairs, jump or run like normal kids. At this time, he also began to develop a stutter in his speech.
Caleb’s mom was told again not to worry that he would grow into his walk and speech. However, after Caleb experienced a heart episode, she put her foot down with the doctors. As any determined mother would do, she took medical leave from work to find out what was going on with her son. After orthopedic visits and multiple casts, Caleb was still not walking like a normal toddler.
Cerebral Palsy is caused by damage to the brain that occurs most often before birth. It can lead to impaired movements and abnormal reflexes, as well as failing to reach movement milestones such as crawling and walking.
Finally, the Kasner family was referred to a neurologist who requested an MRI of Caleb’s brain and genetic testing. The MRI showed multiple spots of white matter in the brain that diagnosed Caleb with mild Cerebral Palsy, while the chromosomal array test revealed Duchenne Muscular Dystrophy.
In May 2018, the Kasner family traveled to Fort Worth for a clinic with a pediatric cardiologist from Cook Children’s Medical Center. After an excellent experience, the family decided to have Caleb’s cardiac ablation surgery with the cardiologist. Mom says, “It just felt right.”
At this time, their social workers told them about the House and its mission of serving families experiencing a medical emergency. Immediately, they knew they wanted to come back to Fort Worth to utilize the facilities.
The Kasner family says their experience at the House was wonderful. Caleb made friends with other RMHFW residents who were experiencing medical emergencies. They loved seeing each other and playing in the playroom. The House’s amenities were one of their favorite things between the activities provided for families (therapy dogs, ice cream social, etc.) and food readily available for families (meals, left-overs to heat up and snacks). Mom says, “It all was so easy.”