This is the amazing moment a five-year-old girl, who has been tethered to a huge ventilator since birth, runs free 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.
She has been attached to a bulky 15lb ventilator – a machine which resembles a vacuum cleaner and helps her breathe – since she was a week old.
Everywhere she went the device went too, and her parents Diana Belmont, 36, and Fernando Galleno, 38, were constantly chasing after her carrying it.
But now, after a six-hour operation to insert an electrical pacer in her chest – Diana has finally ditched the machine.
Uplifting footage shows Diana grinning as she runs down the corridor of the hospital where she underwent the procedure with nothing to hold her back.
Diana Galleno suffers from congenital central hypoventilation syndrome (CCHS) and was forced to carry around a bulky 15lb ventilator all her life
A video shows the youngster grinning as she runs down the corridor of the hospital where she underwent the procedure with nothing to hold her back
In the clip, the five-year-old can be seen hapilly skipping around outdoors – she is clearly elated to be free of the constraining device
Her mother, from Lima, Peru, said the surgery, which took place in the US, has allowed her daughter to ‘experience freedom for the first time’.
She said: ‘It’s amazing to watch her do the things she never could.
‘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.’
‘There were limitations to what she could do’
In the first years of her life, Diana was not able to undergo surgery because there was not enough space in her little chest to operate.
And over the years, worried about the risks that came with surgery – but eventually decided to take the chance to give her her independence.
‘We were always running after a little girl carrying this thing all the time, it was exhausting,’ said her mother. ‘We tried to keep everything normal for her.
Diana pictured with her mother, also called Diana, on her first day of school in 2015 – her parents were constantly chasing after her carrying the ventilator
Her family said they tried to keep everything normal for her – but ‘no matter how hard you try there were limitations to what she could do’
Everywhere Diana went the device went too – her parents feared it would affect her independence
WHAT IS CONGENITAL CENTRAL HYPOVENTILATION SYNDROME?
Congenital Central Hypoventilation syndrome (CCHS) is a condition affecting how the autonomic nervous system manages breathing.
The autonomic nervous system controls a number of bodily processes, such as heart rate, blood pressure, breathing, digestion of food and body temperature.
These processes happen automatically without us having to think about them.
In CCHS, the normal safeguards, used by the autonomic nervous system to control breathing, are impaired.
When breathing is shallow while asleep, the levels of carbon dioxide in the blood increase, which stimulates a breath.
In CCHS, this stimulus does not occur and breathing can stop. In the majority of people, this only happens while asleep, but for people with severe CCHS, it occurs all day every day.
CCHS is caused by a genetic mutation affecting a particular gene named PHOX2B.
It can be passed on from parent to child if a child inherits one copy of the faulty gene.
However, most people with CCHS do not inherit the faulty gene; rather it develops for no reason.
There is currently not a cure but the symptoms can be managed. If untreated, CCHS can lead to disability and death.
Source: Great Ormond Street Hospital
‘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.’
Life has changed dramatically
And so 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.
Little Diana’s pacer was turned on 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 mother 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.
Diana’s mother says her ventilator often got in the way when Diana was playing with friends
The youngster pictured as a baby – she’d had the ventilator since she was a week old
The school girl pictured with her family, father Fernando, 38, mother Diana, 36, and brother Fernando, 7
‘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.’