My son only has two years to live - even a cold could kill him

Phoenix Gill was born 11 weeks early and spent nine weeks in hospital before being allowed home - but his health problems were far from over.

A young toddler has been diagnosed with a life-threatening rare condition that's so severe, even catching a cold could prove fatal. The little tot, Phoenix, aged one, is the fifth child of 29 year old Lucy Gill, who discovered she was pregnant in November 2022.

During her pregnancy, at just seven weeks, Lucy was found to have a subchorionic bleed, a situation where blood collects between the wall of the uterus and the chorion, necessitating close supervision from medical professionals.

In a traumatic turn of events at 31 weeks, Lucy suffered a placental eruption and was urgently rushed by ambulance to Princess Anne Hospital in Southampton.

Following these harrowing circumstances, Phoenix entered the world prematurely at 11:20 am on June 2, 2023, weighing a mere 1.4 kilograms and was swiftly moved to the NICU unit at Winchester Hospital.

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After nine intense weeks in hospital, Phoenix was finally able to go home. However, his time at home lasted only seven weeks before he had to be hospitalized again for five months.

It was during this time that he was diagnosed with terminal 4q deletion syndrome, a rare and alarming chromosomal disorder.

Since the diagnosis, Phoenix's health has been a rollercoaster, with numerous hospital admissions totalling 10 and the need for ongoing assistance from a C-pack machine to aid his breathing.

Lucy, who dedicates her time as a stay-at-home mum in Southampton, shares the stark reality of their situation: "Even a cold will take it out of him."

She describes each hospital visit as fraught with anxiety and uncertainty: "Whenever he is in hospital he is placed in the high dependency unit on death's door."

Acknowledging the severity of Phoenix's health battles, Lucy admits, "We don't know if when we go into hospital if he is going to come out."

Family members make a point to be present during Phoenix's hospital stays, understanding that each visit could potentially be their last farewell.

In sharing her story, Lucy reiterates the moment her journey with Phoenix began, back in November 2022.

Lucy didn't realise she was pregnant until she was already seven weeks along when a subchorionic bleed diagnosis came her way. She explained: "I was monitored closer than usual, it meant that my placenta wasn't properly attached so it was bleeding occasionally."

Despite the diagnosis, medical advice did not warrant concern and Lucy continued with her usual routine.

On the morning of June 2, 2023, at 31 weeks into her pregnancy, Lucy woke up at 5 am to discover she was bleeding and promptly dialed for an ambulance. An urgent trip to Princess Anne Hospital followed, where she was informed that an emergency caesarean section would be necessary.

Recalling the stressful event, Lucy said: "I got to hospital around 7am, they didn't know what was going on."

Shortly thereafter, Phoenix was delivered at 11:20 am after a c-section initiated at 11 am. There were complications during the procedure, Lucy disclosed: "They lost his heartbeat whilst we were in there so the plan was changed and he was put in an incubator."

Regaining consciousness at around 1 pm, Lucy had the opportunity to spend five minutes with Phoenix before he had to be transferred to Winchester Hospital. For nine weeks, Phoenix needed hospital care before being allowed to leave with Lucy commenting: "He couldn't breathe independently, for eight of those weeks he was on oxygen."

As their stay concluded, with Phoenix bottle-feeding, Lucy felt hopeful, "We thought we were taken home a healthy baby, a small premature baby."

However, seven weeks after being discharged, trouble struck again while feeding. Phoenix struggled with his breath and refused his bottle, leading them once more to seek emergency aid.

The situation necessitating another blue-light dash, this time to Southampton General Hospital.

Lucy shared her harrowing experience: "It was so chaotic, I didn't have time to process."

She recounted the frightening medical ordeal: "All I know is they x-rayed him and found a collapsed lung and put him on a c-pack machine."

Reflecting on the prolonged hospital stay, she said: "We were in hospital for five months - there were a lot of investigations."

The uncertainty was palpable as Lucy admitted: "As his parents, we didn't think he was coming home."

In a devastating turn of events, Phoenix was diagnosed with terminal 4q deletion syndrome in November 2023.

A keen-eyed doctor spotted signs that led to further tests: A doctor noticed that Phoenix had a small chin and eyes far apart so took him for genetic testing.

Lucy expressed her feelings about the diagnosis: "I don't think a diagnosis really does anything, a diagnosis does nothing to me - it is just labels."

The internet became a source of stark information: "We didn't know how much about it, we googled it and found some studies that they did and it told us the life expectancy was two years."

The reality began to sink in: "We then started to panic and wondered what his life would look like."

Despite everything, Lucy confessed she doesn't know what the future holds.

Phoenix's condition has meant frequent hospital visits: Since his diagnosis, Phoenix has been in and out of the hospital at least 10 times - even a cold could be life-threatening.

Lucy detailed the constant vigilance required to keep Phoenix stable: "He is on a c-pack machine over night to help him breathe and to keep his lungs open, even a cold could put him on death's door."

She highlighted the lack of research: "The problem is there isn't much research into his condition so we don't know what is going to happen."

The need for information is crucial for them: "I know we can't always be told what is going on and what his life will look like but as parents, we need more information."

Lucy lovingly described Phoenix's personality: Lucy said that Phoenix is quirky and cheeky - always wanting to play with his siblings.

She also shared a glimpse into his joys: She said: "He loves going outdoors and watching his siblings play."

"It is upsetting that we can see how he wants to get up and play with them but he can't".

"It is like his brain is there but the body doesn't have movement."

"He is happy and content, you wouldn't guess that he has been in the hospital most of his life."