Month after month, the pediatrician insisted their infant son, Diego, was perfectly normal. But Yelisbell Machado said something deep inside, a mother’s intuition, told her otherwise.
Even though he was the proper weight and cute as a button, something didn’t seem quite right. He was nearly 5 months old and still couldn’t hold his head up. When she sang and spoke to him, he didn’t respond. Babies younger than him were developing and he wasn’t.
Then, on the night of Oct. 12, 1999, she realized her worst fears were coming true.
The family was gathered inside her mother’s house in Caracas, Venezuela, and fireworks went off on the street. Everyone in the house jumped, even the dog. Well, everyone except baby Diego, who was 5 months old at the time.
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“I asked my husband, ‘Did you see that?’” Machado said. “He said, ‘What?’ I told him, ‘Our son didn’t get scared by the fireworks. He didn’t jump, nothing, no reaction.’
“I was a young mom, the doctor was telling me he was fine, so I tried to believe him. Finally, that day with the fireworks, I said, ‘I am done with that doctor.’ He tells me everything is OK, but I had a bad feeling.”
The next day, they took him to another pediatrician.
“The appointment lasted five minutes,” Machado said. “That’s how long it took for the doctor to tell us that Diego doesn’t hear. He doesn’t see. He doesn’t move his head. The doctor said, ‘Your son of five months has the development of a 1-month-old. You must see a neurologist immediately.’ From that moment, our life as we knew it was over. The colors of our lives changed forever.”
The baby was diagnosed with cerebral palsy and West syndrome, a severe form of epilepsy that causes infantile spasms, and varying levels of mental retardation. Diego’s case was particularly serious. The average age of onset is 6 months. Machado and her husband, Alexander, were told that Diego may not live to his fifth birthday.
Seventeen years later, Machado is telling the story of their “odyssey” in the family’s townhouse in Doral. While she speaks, through moistened eyes, she fills a syringe with baby food and injects it into a gastronomy tube in Diego’s stomach. Other boys Diego’s age are in high school, playing sports, going to parties, thinking about college. He is in a wheelchair, hunched over, coughing and making gurgling noises. He has never spoken and has trouble breathing.
Machado explains how they have exhausted every option to give Diego a better life.
Shortly after the diagnosis, they collected donations from friends and family to bring Diego to Miami Children’s Hospital for a consult with renowned epilepsy specialist Dr. Michael Duchowny. Diego spent a week undergoing a battery of tests. They did an electroencephalogram and found 200 brain convulsions over 18 hours. Doctors told Machado and her husband that their son could not be cured, that all they could hope for was a comfortable quality of life.
So, they returned to Venezuela. Then, in November 2000, friends suggested they take Diego to Cuba for medical treatment through a humanitarian exchange. It is a decision Machado said she deeply regrets.
“We spent three long, hard months in Cuba; it was horrible,” she said. “Of all the things I have done for him, that was the one thing that I regret. Nothing went well there. He got worse. They experimented with his medication and he developed asthma, high fevers, even fell into a coma. They didn’t even have the little nebulizer masks. I had my husband send them to us. This is my personal opinion — I am not a doctor, didn’t go to medical school, but I have done so much research on this for the past 17 years that I feel I am qualified to offer my opinion — and in my opinion, it’s a lie that the Cuban doctors are advanced.
“The chief of neurology at the hospital Diego was at went to Mexico to have an operation for an aneurism. I said, ‘If they can’t operate an aneurism here, how can they help Diego?’ Diego was never the same after that time in Cuba. I even had my husband send a photo album to me in Cuba so I could show the doctors pictures of how Diego looked before he got there. He could sit up, and had started to crawl, and when we left Cuba, I had to open his mouth to feed him.”
They returned to Caracas, and after much agonizing and genetic testing, they decided to have another child. Their doctors highly recommended it.
“They told us, ‘You can’t live with the agony that a child means only doctors’ appointments and therapy and illness. You have to know what it’s like for your child to hug you.’ But we were scared.
Would we neglect Diego? What if we had another child like him? They told me, ‘You have the same chance as any other woman to have a healthy baby.’ I put it in God’s hands, and took a chance.”
Their daughter was born in October 2002. They named her Diana, in honor of a customer of Alexander’s who gave a large donation for Diego’s trip to Miami Children’s Hospital.
In May 2015, fed up with the changes in the Venezuelan government, the Machado-Alarcon family moved to Miami. Their first home was the Ramada Inn in Hialeah. Alexander found a job at a junkyard called MOP Auto Parts, and he walked three miles to and from work before a co-worker lent him a bike. When he brought home his first $200 paycheck, they had a party.
Machado, who studied law and business, gave up her job to stay at home with Diego. She spends her day carrying him up and down the stairs, changing his diapers, feeding him and helping him clear chest secretions. The family gets some help from the Advocacy Network on Disabilities, which nominated Diego for Wish Book. But they need more.
Among the holiday gifts Diego could most use is an adjustable bed that elevates so his mother doesn’t have to be bent over so much, and a Cough Assist respiratory machine, which clears secretions from the lungs and can range from $1,800 to $4,600. They could also use diapers and wipes. And, because they have very little money left to spend on 14-year-old Diana, a few Christmas gifts for her would also be welcome.
“Diego is the nucleus of our family,” Machado said. “That’s his mission. He’s our Little Miracle. Wherever he goes, a line of angels waits for him, at the supermarket, at the mall. People we don’t even know pray for him and help him. And I am the woman I am today because of him.”
How to help
Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. To give via your mobile phone, text WISH to 41444. For information, call 305-376-2906 or email wishbook@MiamiHerald.com. (Most requested items: laptops and tablets for school, furniture, accessible vans) Read more at MiamiHerald.com/wishbook.