Even though Jonah is only three years old, he exemplifies an #EverydayHero every day. He was born with Marfan syndrome, a disorder of connective tissue that strengthens the body's structures. Although struggling each day with this genetic disorder, Jonah brings joy to those around him.
Unfortunately, Jonah has spent only a total of five months at home. When Jonah was five months old, he weighed only 10 pounds and had his first heart surgery to repair a mitral valve. The initial surgery failed and he required a second surgery to replace the valve.
After his second heart surgery, the doctors decided that Jonah needed to start using a feeding tube instead of eating by mouth because of the potential dangers it presented to his health. Doctors also placed him on a feeding tube to protect his health. No matter how much he ate, he was not able to gain weight and began to struggle with his breathing. Yet Jonah could not gain weight and began to struggle with breathing. At this point, the doctors advised Jonah’s parents that he was not going to make it anymore on his own.
When Jonah was nine months old, he received a tracheostomy and has been on oxygen and a ventilator since that point. In the summer of 2013, Jonah was released from the hospital where he was to stay home with his family. Three months into his stay, his heart rate skyrocketed and his parents took him to the hospital. When they arrived at the, doctors discovered that it was 104.7 degrees. The doctors immediately put him on IVs and did everything they could at the hospital he was at to stabilize him.
Shortly after, Jonah was transported to a larger hospital. When he arrived, his temperature was 108.9. Jonah suffered a stroke that night from overheating. Doctors told his parents that he would not make it through the night or that he wouldn't wake up again. But he did.
In April 2014 Jonah had his third heart surgery replacing his aortic root. He came out of surgery just fine, but two weeks into the recovery process, he spiked a 106-degree fever and required chest compressions because his blood pressure was dropping so fast. But this Superman is strong and made it.
After surgery, Jonah’s parents tried several times to take Jonah home, but every time he had to be hospitalized for breathing problems.
In June 2014, Jonah’s parents had to decide what was best for him. Now Jonah is in a long-term care facility called Home of the Innocents. He gets the care he needs and (his family can spend time watching him grow.
Soon Jonah will need spine surgery because his Kyphosis (curve) is 120 and 80 degrees.
Jonah’s parents do not know what is next in Jonah’s life, but they are with him every step of the way and thank God for their miracle. He really is their Superman.