Skip to Content Facebook Feature Image

Boy born with virtually no immune system spends months living in a germ-proof bubble

News

Boy born with virtually no immune system spends months living in a germ-proof bubble
News

News

Boy born with virtually no immune system spends months living in a germ-proof bubble

2018-10-03 11:17 Last Updated At:11:17

Adorable Milo Knight was so prone to infection, his parents couldn’t even kiss him – but now, he’s been saved thanks to his hero dad.

A primary school teacher has spoken about her crippling guilt after her baby boy – born with virtually no immune system – was forced to live in a bubble for months, so prone to infection she could not even kiss him.

More Images
Milo spent three months in a sterile isolation unit (PA photo)

Milo spent three months in a sterile isolation unit (PA photo)

The family ringing the end of treatment bell (PA photo)

The family ringing the end of treatment bell (PA photo)

James having his stem cells harvested (PA photo)

James having his stem cells harvested (PA photo)

Milo's parents hope he is home in time for Christmas (PA photo)

Milo's parents hope he is home in time for Christmas (PA photo)

Tazmin with Milo on the ward (PA photo)

Tazmin with Milo on the ward (PA photo)

Tazmin, Milo and James in Cyprus just before he was diagnosed (PA photo)

Tazmin, Milo and James in Cyprus just before he was diagnosed (PA photo)

The stem cells James donated (PA photo)

The stem cells James donated (PA photo)

Milo being cuddled by his granddad for the first time in months (PA photo)

Milo being cuddled by his granddad for the first time in months (PA photo)

The family on transplant day (PA photo)

The family on transplant day (PA photo)

Milo in his 'bubble' room (PA photo)

Milo in his 'bubble' room (PA photo)

Milo about to head out on his first trip out after his transplant (PA photo)

Milo about to head out on his first trip out after his transplant (PA photo)

Living in virtual isolation because of an ultra-rare immune system disorder, severe combined immunodeficiency (SCID), Milo Knight, now seven months, of Hull, East Yorkshire, received the shocking diagnosis after his worried parents sought advice over a persistent cough.

Saved thanks to a bone marrow donation from his electrician dad, James Knight, 28, he is now out of the bubble and hopes to be home for good with him and his mum, Tazmin, also 28, in time for Christmas.

Milo spent three months in a sterile isolation unit (PA photo)

Milo spent three months in a sterile isolation unit (PA photo)

Speaking about Milo’s ordeal, Tazmin said: “I felt incredibly guilty that family, who we’re really close to, couldn’t visit.

“There was a bell on the hospital ward we were on that children ring to signal the end of their treatment. I walked past it so many times, thinking, ‘When’s our turn?’

“Now, thanks to James saving Milo’s life, we’ve rung it. It was so emotional. I’m very proud of my boys.”

The family ringing the end of treatment bell (PA photo)

The family ringing the end of treatment bell (PA photo)

At first, after his birth on 20 February this year, Milo seemed perfectly healthy, going on to develop a cough when he was around two months old.

Doctors initially thought was just a bug, leaving it to clear up on its own.

“The following month, we were meant to be going on a family holiday to Cyprus,” said James. “We took Milo back to the doctor to check he was well enough to go, as the cough was lingering.”

James having his stem cells harvested (PA photo)

James having his stem cells harvested (PA photo)

He added: “They said he’d be okay, and that it was probably just taking a little more time than usual to get over his bug.”

Once home from their trip, though, Tazmin and James took Milo for his three-month check-up – and health visitors noticed his weight gain had slowed.

Shortly afterwards, he suddenly stopped taking his bottle, having previously been a good feeder.

Milo's parents hope he is home in time for Christmas (PA photo)

Milo's parents hope he is home in time for Christmas (PA photo)

Anxious, his parents rang NHS 111, the non-emergency number, and were advised to take him straight to A&E.

At Hull Royal Infirmary, medics began running urgent tests, thinking he could have anything from a chest infection to reflux, where a baby spits up shortly after feeding.

James continued: “After three days, we were called into a side room, which is never a good sign.”

He continued: “They told us Milo had SCID, which neither of us had ever heard of. They explained it was very rare, and very severe.

“The only two hospitals in the UK that could treat us were London’s Great Ormond Street, or Great North Children’s Hospital in Newcastle-Upon-Tyne.

“We were told not to Google the condition – but we had to. We wanted to know what was happening.”

Tazmin with Milo on the ward (PA photo)

Tazmin with Milo on the ward (PA photo)

According to the NHS, SCID is caused by a genetic mutation and means that specialised white blood cells, which usually form the immune system, are either missing or not functioning properly.

At one time, most affected babies would not survive beyond a year, but modern treatments are now available to either reduce the risk of infection or cure it completely.

After the diagnosis, James, Tazmin and Milo were sent to Great North Children’s Hospital almost 150 miles from home, with no idea how long they would need to stay there.

Tazmin, Milo and James in Cyprus just before he was diagnosed (PA photo)

Tazmin, Milo and James in Cyprus just before he was diagnosed (PA photo)

Right away, Milo was admitted to a specialist ward known as the ‘bubble ward,’ because of its individual high-tech sterile rooms, designed to protect patients from infection.

“Before going in, the nurse told us to kiss Milo, as it’d be the last time we’d be able to do so for a while,” said James. “Tazmin found that especially hard. She just broke down.”

Doctors soon managed to determine that Milo would require a stem cell transplant – but no match was found on the official database.

The stem cells James donated (PA photo)

The stem cells James donated (PA photo)

Thankfully, James was a close enough match and medics were even able to remove any potentially harmful cells from his bone marrow before transplanting it.

But Milo still had to spend three months in the isolation unit to ensure he was strong enough, and to keep him away from any infections, before having the procedure.

Tazmin explained: “You’re only allowed a set number of carers who can enter the room itself, so a lot of our family couldn’t physically touch Milo for months.”

She continued: “There was a park outside and, one day, James’ cousin’s little girls, who we’re really close to, came there to visit. They could only look through the window, but seeing them was so emotional.

“We had to wash all Milo’s clothes and toys every night, and disinfect everything. We washed our hands about three of four times, all the way up to the elbows, before being allowed in.

“We could touch him, but had to make sure he didn’t touch our faces. Worst of all, we couldn’t kiss him.”

Milo being cuddled by his granddad for the first time in months (PA photo)

Milo being cuddled by his granddad for the first time in months (PA photo)

Eventually, following a week of chemotherapy to wipe out his own immune system, Milo had the transplant in August 2018.

Then, the following month, he was finally allowed outside for the first time in weeks.

James recalled: “He was just looking around, taking everything in. I think he’d forgotten what the outside world was like, so it was as if he was experiencing it all for the first time again.”

The family on transplant day (PA photo)

The family on transplant day (PA photo)

On 10 September, the family were discharged from the ward and moved into a nearby ‘halfway house,’ so Milo could still be closely monitored.

Now, the remarkable toddler is recovering well – and James and Tazmin hope he will be home for his first Christmas.

The proud parents have also set up a JustGiving page to raise money for The Bubble Foundation, who provide equipment and fund vital research.

Milo in his 'bubble' room (PA photo)

Milo in his 'bubble' room (PA photo)

Touchingly, their loved ones have formed a group called Milo’s Knights, putting on all sorts of fundraising events – and England cricketer Ben Stokes has even donated to the cause.

“The Bubble Foundation is incredible. They helped us so much, and we want to give something back,” said Tazmin.

“It was hard to see the light at the end of the tunnel, but Milo was so brave throughout. He’s made of strong stuff.”

Milo about to head out on his first trip out after his transplant (PA photo)

Milo about to head out on his first trip out after his transplant (PA photo)

She added: “You take for granted all these little things that we’re only now able to do again, like kiss our baby and take him to the park. We’re so proud of Milo and it means so much that James could save him.”

To donate, visit www.justgiving.com/crowdfunding/milos-knights

Next Article

Menendez family criticizes LA district attorney for opposing brothers' new trial

2025-02-28 20:53 Last Updated At:21:00

LOS ANGELES (AP) — Cousins of Erik and Lyle Menendez spoke out Thursday criticizing the Los Angeles district attorney's recent decision to oppose a new trial for the brothers, who have spent nearly 30 years in prison for the 1989 killing of their parents.

The Menendez cousins applauded California Gov. Gavin Newsom for his decision a day earlier to order the state parole board to investigate whether the brothers would pose a risk to the public if they are released, the first step for the governor to eventually decide whether or not to grant clemency.

The brothers, 18 and 21 at the time, were found guilty in the murders of their mother, Kitty Menendez, and entertainment executive father, Jose, and sentenced to life in prison without parole. They began their latest bid for freedom in recent years after their attorneys said new evidence emerged about their father’s sexual abuse, and with the support of most of their extended family.

In a lengthy press conference last week, District Attorney Nathan Hochman cast doubt on the new evidence of sexual abuse and characterized the brothers’ own testimony of sexual abuse as untrustworthy because they had told five different explanations for why they committed the murder.

Anamarie Baralt, Jose Menendez's niece, called Hochman's decision “extra hurtful” to the family after they had met with his office weeks prior to share their experiences.

“It ignores how far we have come in recognizing the long-term effects of abuse and the systemic barriers that keep victims silent," Baralt said. “The expectation that victims should have immediately disclosed their abuse ignores the reality of trauma."

Baralt said their relationship with the current administration was different from theirs with the previous district attorney George Gascón, and questioned whether Hochman's decision took into account current knowledge of trauma.

“Is he applying the laws as it exists today, with a modern, trauma-informed understanding? Or is he relying on an outdated harmful framework that has since been rejected," Baralt said.

Tamara Goodell, Erik and Lyle Menendez's second cousin, also expressed her disappointment at the lack of acknowledgment of the brothers' achievements in prison.

She said the brothers, who are now in their 50s, have “created careers for themselves” while incarcerated, detailing the many peer support groups and initiatives they started in prison.

For Erik Menendez, this includes an Alternatives to Violence project, a series of workshops promoting nonviolent conflict resolution; a disabled and elderly inmate support group; and a 12-step meditation class.

Lyle Menendez created the Green Space project for the beautification of prisons through murals and landscaping, “marking the first time prison administration entrusted an inmate to lead such a redesign,” according to Baralt. He also started a mentoring group for teens with life sentences without possibility of parole, and a bulletin for fostering communication within the prison population.

The proposed resentencing for the brothers is set to be taken up at a March hearing and would make them immediately eligible for parole. Hochman said he would share an update on his position in the coming weeks, and that the decision would take into account the brothers’ rehabilitation during their time in prison.

Goodell and Baralt said it was clear from their own interactions with the brothers over the decades that they had “immense remorse” for their actions the night they killed their parents.

Baralt recalled something that Lyle said to her in a 2006 letter.

“He said, ‘I need you to understand that I recognize my actions are your own personal tragedy and I know I can never take it back, but I will spend the rest of my life trying to make it better,’” Baralt said.

FILE - Lyle, left, and Erik Menendez appear in court for a preliminary hearing held in Beverly Hills, Calif., April 12, 1991. (AP Photo/Kevork Djansezian)

FILE - Lyle, left, and Erik Menendez appear in court for a preliminary hearing held in Beverly Hills, Calif., April 12, 1991. (AP Photo/Kevork Djansezian)

FILE - Lyle, left, and Erik Menendez sit in Beverly Hills Municipal Court where their attorneys delayed making pleas on behalf of the brothers who are suspected in the murders of their parents on March 12, 1990. (AP Photo/Nick Ut)

FILE - Lyle, left, and Erik Menendez sit in Beverly Hills Municipal Court where their attorneys delayed making pleas on behalf of the brothers who are suspected in the murders of their parents on March 12, 1990. (AP Photo/Nick Ut)

Recommended Articles