Snyder boy surviving with Noonan syndrome

Three-year-old Jake “Jakey” Realsola would not have been born if his parents would have listened to doctors.
Realsola suffers from Noonan syndrome and his parents were told to abort him. But they did not listen.
Noonan syndrome is a genetic disorder that causes heart, gastrointestinal, lymphatic and developmental abnormalities. The syndrome hard to detect because it varies in severity.
He was born nine weeks prematurely and spent the first four months of his life in a neonatal intensive care unit. On his first birthday, he had a tonsillectomy, which was unsuccessful because it worsened his sleep apnea.
He later spent two months in the hospital to get a trachea tube put in due to an obstruction of his airways.
“He has been in the hospital multiple times. He has a low immunity,” said his grandmother, Charman Gonzalez.  “His doctors classify him as a medically fragile child.”
The life expectancy of children with Noonan syndrome is not listed on the National Organization for Rare Disorders (NORD) website, but it does state that many complications can develop and are life threatening.
Realsola visits several doctors in San Antonio, sometimes as many five on a trip, and appointments are scheduled every three months.
Gonzalez said that either his father, Michael Realsola, herself, or his grandfather, David Gonzalez are always with Jake.
“He requires 24-hour monitoring constantly by someone who knows his illness because if his trachea (tube) comes out, you only have a few seconds to put it in,” Charman Gonzalez said.
Realsola will turn four on Nov. 7, but he has never had a birthday celebration. Each year around his birthday, he has either been sick or in the hospital. His family is planning a birthday party for him again this year.
Charman Gonzalez said Jake has spent about a year of his life in the hospital.
Even though it is typical for Noonan syndrome children to have learning disabilities and speech problems, Realsola’s grandmother said he is extremely sweet, playful and smart. He knows how to use an electronic tablet, which he refers to as a “ha.”
“He is saying four or five-word sentences,” she said. “He is talking a lot.”
Michael Realsola said his son is one of the happiest children he has seen.
“It makes you look at life different. Him being happy makes me happy,” he said. “When he was still in the womb, they told us he wouldn’t live past six or eight months and he’s almost four years old. They asked us to terminate the pregnancy, but I’m glad we didn’t.”
He said taking care of a special needs child is a lot of responsibility and makes him look at life and his other children differently.
“It’s helpful with my mom. Her and David help me a lot with him,” Michael Realsola said, adding he wants to give his son a normal life.
But something as common as a cold could be life threatening.
“He’s immunity is so fragile,” Michael Realsola said. “I’m very thankful that he is here with us today.”
Charman Gonzalez said her grandson requires a lot of machines to survive.
“We have to suction (his airways) every 30 minutes to an hour, change his (trachea) tube and manage his feeding tube,” she said.
Before he was born, imaging scans revealed a cystic hygroma on the back of his neck.
Charman Gonzalez said many people began praying for him and though doctors said it was very unusual, it drained on its own before his birth.
“God would tell me to get up and pray in the middle of the night,” she  said. “I would pray and pray and I never stopped.”
David Gonzalez said his grandson’s personality is starting to show.
“He doesn’t have any enemies, he trusts everyone. The elderly people, he loves every one of them. The police, he loves the police,” he said. “He doesn’t let his disability hold him back. We take him on trips for learning. He loves music.
“I think we are the lucky ones to have him. He strengthens our family. He made me realize how fortunate we all are. Seeing him have to suffer when he is real sick and the hospital stays. That part is depressing because he can’t have visitors and we have to guard him against those kinds of things.” 
The family said Realsola likes to go to Walmart and Toys-R-Us to buy toys and going outside to play with dirt and rocks.
“He loves playing with his siblings and it is amazing how none of them raise a hand to him but take care of him instead,” Michael Realsola said.
His siblings are Jasmine, Jaylynn, Jonathan, Maison, Ethan and Zachary and his stepmother is Sarina Realsola.
His favorite pleasure foods are corn chips, waffles and fries.
His other grandparents are Johnny and Regina Realsola. His great-grandparents are Charles and Deana Cooper and Soledad Realzola, all of Snyder.