Two years after separation, Jadon soars while twin Anias looks up

Jadon is "like a personality with feet," said Nicole; Anias is the "white canvas waiting to become a masterpiece."

"He is a child without limits," she said.

Christian says that Anias is just as remarkable, simply operating at a different pace.

"Nowadays, we are sort of a quantum leap society – you know, we want quick fixes," he said. "Anias can do incredible things and do incredible things, but it's not just a leap forward, it's something that's going to happen gradually."

Jadon and Anias captivated millions of people around the world when they underwent a 27-hour separation operation in October 2016 at the Children's Hospital of the Montefiore Medical Center in New York.

The twins, aged 13 months at the time, shared a section of brain tissue 5 centimeters by 7 centimeters. Studies have shown that 80% of these so-called "craniopage" twins die of medical complications at 2 years of age if they are not separated.

The parents of the boys leave CNN exclusively in their lives, to follow him throughout the operation and recovery of the marathon, culminating in a documentary titled "Separated: Save the Twins".

The McDonalds faced an unimaginable choice: to separate the boys and enter a world of strangers or keep them together and watch them deteriorate and die.

Giving boys "their best shot"

Christian says that they have undoubtedly made the right choice. "If that's what the boys needed, that's what we were going to do," he said. "We were going to give them the best possible shot and we have the impression of doing it."

"We believe that our faith and our conviction have definitely won us over.

Added Nicole, "when we decided to share our story with the world. I did it with the intention of knowing that everyone would see a miracle. "

The miracle that boys are separated for the first time, that mom and dad each hold their baby separately, that boys sleep separately."

Nicole still retains her tears as she recalls these moments: "You Always consider each decision you make for both children and hope that the one you have taken is the best thing you have done for them are in charge of their lives. "[19659002] Before the surgery, whenever the parents had to move the boys, they had to transport them together in a carefully choreographed way.

In 2016, Nicole and Christian transferred their lives to the Bronx to get closer to the medical staff of Montefiore in anticipation of the operation.

All the trip was "surrealist," said Nicole.

After the operation, while the boys were in rehab, the family moved into a renovated house that Christian had renovated in upstate New York State about four months ago, desperate to find their loved ones and aspiring back to life in a small town, they settled down in Indiana.

They chose a house on about two acres of land, on country roads and between fields of corn.They wanted a place to give space to the family, let the boys grow and prosper and allow their older brother, Aza, 5, to flourish alone.

"I had reached a point where I could not do it anymore," said Nicole. "I needed my mother.I needed everyone who could come to my home to help me, because it was getting too hard."

"I had to go home . The boys needed it, and Aza needed it. "

All this is on display as Aza flies around the house, hiding rubber letters so that Jadon can pick them up as if they were on a scavenger hunt." Jadon and Aza even go to The school. "Jadon and Aza are both going to school and Anias goes to kindergarten one day a week," said Christian. "So we try to be a family. normal. "

When twins are united to the head, one of them tends to be more dominant. In this case, it is Jadon who dominated, whose body has worked overtime to keep them alive.

After surgery, Anias had more difficulty breathing and was using a respirator to keep her alive and other equipment was connected to her to monitor her vital functions.

Anias has faced significant setbacks in the last year. He stopped driving. He stopped playing with toys. stopped raising his head because so much fluid had accumulated around his brain and weighed him down.

for me to watch, "says Nicole.Anias did not" stop development, but regressed into development. "

He also developed an eczema so severe, says his mother, that his legs and his ankles were like "raw meat." He started having seizures so severe that he was getting blue 15 times a day.

"I thought I was losing it forever, and I was going to get it. was devastated, "said Nicole.

But recently her tonsils and herbs were removed, allowing her to breathe on her own and free her from the panoply of medical equipment. Since then, the parents have seen a tremendous improvement.He started to lift his head and use his hands and feet like never before – a spark of hope after a year of heartbreak.

On the fridge, the family presents a painting splashed at the hand by Anias, titled from his parents. "Painted that with the right hand that I'm not supposed to be able to use," he says.

"Anias medically had Mount Everest," said Nicole. "That's what I started to understand, it's that he climbed his medical mountain."

Christian says, "He's progressing, he's just slow, but it's there, every day."

& # 39; want it to fly "

At CNN's last visit, the boys were closer in their progress, believing that the operation had brought them back to childhood in many ways . They had to learn to sit, crawl and do the other things that every baby learns. Anias was a few months behind Jadon's development, but it seemed that he was on track to catch up with him. He was able to roll and clap his hands.

"What was difficult was to see that he was on the same path as Jadon, then something happened – a lot of things happened – getting him out of the race for a minute," he said. Nicole. "I have the impression of constantly fighting for the Anias I know."

As a mother, she says, "You just want him to fly, and he's still stuck on the ground." It was really hard, but we just had that glimmer of hope, like last month.

"That both brings us up," she said, "and we are ready to help her get off the ground.

"He is the most medically stable he has ever been, he is getting stronger every day," she said. "I think we will see a huge change in him next year."

She is determined to see Anias become the boy she thinks she can be. She tells him things like, "One day, you're going to sit down, one day you'll walk to me." He often smiles at his words of encouragement.

Both parents say that they are focused on the moment, simply trying to enjoy their boys and savoring their growth.

me, "said Christian." But that does not mean that they can not have a good life. "

He says he and his wife were particularly worried about whether the boys' hair would grow back enough to cover the scars on their heads, but they are now cutting their hair voluntarily: "They have won these scars. You know, they can be proud of them. "

At the family table, Nicole tells the story of Jadon who had spilled a drink at lunch and how he had reassured her by telling him : "Mom, it's only an accident." She says that he then looked at her and said, "I'm smart." She laughed and told him "You're smart." Nicole was still laughing when Jadon added, "I'm funny."

While she's telling this story, Jadon looks at her intently. She bends over and kisses her on the top. He decides to nail on the third adjective to describe himself.

"And happy," he shouted.

"Jadon is happy," Nicole told him.