This is the amazing moment a five-year-old girl who has spent her entire life tethered to a huge ventilator runs freely after undergoing surgery to help her breathe on her own.
Diana Galleno suffers from congenital central hypoventilation syndrome (CCHS), a rare condition affecting the autonomic nervous system which controls breathing.
As a result the little girl has been attached to a bulky 15lb ventilator – a machine to help her breathe which resembles a vacuum cleaner – since she was a week old.
Everywhere she went the device went too, and her parents Diana Belmont, 36, and dad Fernando Galleno, 38, were constantly chasing after her carrying it.
But now, after a six-hour operation to insert a pacer help her breathe for herself, the little girl has finally been able to ditch the machine.
Uplifting footage shows her grinning as she runs down the hallway of the hospital where she underwent the procedure with nothing holding her back.
Her mom Diana, of Lima, Peru, said the surgery, which took place in Chicago, US, has allowed her daughter to “experience freedom for the first time”.
The full-time mom said: “As a mom it’s amazing to watch her do the things she never could.
“We were always running after a little girl carrying this thing all the time, it was exhausting.
“We tried to keep everything normal for her.
“If she wanted to go down the slide, we would help her to with the vent but no matter how hard you try there were limitations to what she could do.
“I also worried about her independence. When she was on the ventilator, she had so little.
“We helped her change, helped her to the bathroom. If she wanted to move from one school desk to the other, she would need help.
“There was also a worry about the machine itself, sometimes there were problems with it, or at school sometimes, certain tubes would fall out.
“I was always wondering, ‘How would she be if she was on her own?’
“It came to the point where my husband and I decided that the surgery was the right thing for Diana, even though it was serious. It was time for her to move forward.”
In the first years of her life Diana was not able to undergo surgery because there was not enough space in her chest cavity to operate.
But last October she and her parents flew to the US so she could undergo the risky operation at Lurie Children’s Hospital, Chicago.
Surgeons inserted a phrenic nerve-diaphragm pacer into her chest, a device which sends electric impulses to the diaphragm, stimulating it to breathe.
The little girl’s pacer was turned on for the first time in December, allowing her to breathe without her machine for the first time in her life.
Since that day, life has changed dramatically for the family.
Her mom said: “Suddenly she wants to do all the things she never could do before and that’s both exciting to see and worrying at the same time.
“It’s such a huge relief to me. Before I would have to help Diana to the bathroom, or to get a glass of water and now she can do it on her own.
“She is so excited by it and it makes us so happy to see her have a little bit of freedom for the first time in her life.
“When your child is sick you realize how even the smallest things, even the tiniest bit of progress, is so special.
“It has been such an emotional time for our family and we’re still adjusting to it all.”
Dr Anthony Chin, Director of Surgical Critical Care in Lucie Children’s Hospital who operated on Diana, said: “The children we operate on have very often been tethered to a ventilator for the entirety of their lives.
“To see the difference this procedure makes in the lives of children like Diana is what keeps us doing what we’re doing.”
