'My son was diagnosed with a rare condition - even a cold could kill him'

One-year-old Phoenix has a rare condition which means even catching a common cold could put him in a life-threatening condition and has spent most of his life in hospital

A toddler has been diagnosed with a life-threatening rare condition which means even a cold could kill him.

Lucy Gill, 29, found out she was expecting her fifth child, Phoenix, now aged one, in November 2022. At seven weeks Lucy was diagnosed with a subchorionic bleed, when blood pools between the wall of the uterus and the chorion, and was closely monitored by doctors. Then, at 31 weeks, Lucy's placenta erupted and she was rushed to Princess Anne Hospital in Southampton.

Just hours later, Lucy gave birth to Phoenix at 11:20am, weighing 1.4kg (3lb) and was transported to the NICU unit at Winchester Hospital. Phoenix spent nine weeks in hospital before he was able to go home. After seven weeks at home, Phoenix was back in the hospital where he spent five months and was diagnosed with terminal 4q deletion syndrome - a rare chromosomal disorder. Since then, he has been back in and out of the hospital 10 times and requires a C-pack machine to help him breathe.

After seven weeks at home, Phoenix was back in the hospital where he spent five months and was diagnosed with terminal 4q deletion syndrome - a rare chromosomal disorder. Since then, he has been back in and out of the hospital 10 times and requires a CPAP machine to help him breathe.

Lucy, a stay-at-home mum, from Southampton, Hampshire, said: "Even a cold will take it out of him. Whenever he is in hospital he is placed in the high dependency unit on death's door. We don't know if when we go into hospital if he is going to come out. Family will always come and visit him whilst he is in hospital just in case."

Lucy found out she was expecting her fifth child in November 2022. She didn't find out she was pregnant until she was seven weeks old and was diagnosed with a subchorionic bleed. The mum said: "I was monitored closer than usual, it meant that my placenta wasn't properly attached so it was bleeding occasionally. They told me it wasn't something to be concerned about so I carried on as normal.

At 31 weeks pregnant, Lucy woke up at 5am she noticed bleeding and called an ambulance. She was taken to Princess Anne Hospital, where she was told she would need to give birth via c-section. Lucy said: "I got to hospital around 7am, they didn't know what was going on. I got taken down for my c-section at 11am and Phoenix was born at 11:20am. They lost his heartbeat whilst we were in there so the plan was changed and he was put in an incubator."

Lucy came around at 1pm and she was able to see Phoenix for five minutes before he was taken to Winchester Hospital. Phoenix spent nine weeks in the hospital before he was allowed home. She said: "He couldn't breathe independently, for eight of those weeks he was on oxygen. I bottle fed him on the last week and we were then able to take him home. We thought we were taken home a healthy baby, a small premature baby."

Seven weeks later, Lucy was trying to feed Phoenix but he wasn't taking his bottle and struggled with his breathing. They called an ambulance and Phoenix was blue-lighted to Southampton General Hospital. Lucy said: "It was so chaotic, I didn't have time to process. All I know is they x-rayed him and found a collapsed lung and put him on a c-pack machine. We were in hospital for five months - there were a lot of investigations. As his parents, we didn't think he was coming home."

In November 2023, Phoenix was diagnosed with terminal 4q deletion syndrome. A doctor noticed that Phoenix had a small chin and eyes far apart, so he was taken for genetic testing. Lucy said: "I don't think a diagnosis really does anything, a diagnosis does nothing to me - it is just labels. 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. We then started to panic and wondered what his life would look like."

Lucy said she doesn't know what the future holds. Since his diagnosis, Phoenix has been in and out of the hospital at least 10 times. He breathes through a machine overnight, and the mum has been told that even a cold could be life-threatening to her son. Lucy said: "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. The problem is there isn't much research into his condition so we don't know what is going to happen. 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 said that Phoenix is quirky and cheeky - always wanting to play with his siblings. 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."