Connecting Ehler’s-Danlos Syndrome and Complex Regional Pain Syndrome

'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

Brave Phoenix, 1, lives with a life-threatening condition (

Image: Lucy Gill / SWNS)

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.

Lucy Gill was diagnosed with a subchorionic bleed when she was seven weeks pregnant (

Image:

Lucy Gill / SWNS) The youngster has been in out of hospital and requires a CPAP machine to help him breathe (

Image:

Lucy Gill / SWNS)

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 found out she was expecting her fifth child in November 2022 (

Image:

Lucy Gill / SWNS) Phoenix wasn't taking his bottle and struggled with his breathing (

Image:

Lucy Gill / SWNS)

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."

My Son Only Has Two Years To Live - Even A Cold Could Kill Him

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.

Read more: Sentences to youngest killers reviewed

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."

Baby Phoenix (Image: No credit)

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."

Baby Phoenix. A toddler was diagnosed with a life threatening rare condition (Image: No credit)

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."

Imposter Syndrome

article continues after advertisement

Overcoming Imposter Syndrome

Overcoming imposter syndrome involves changing a person's mindset about their own abilities. Imposters feel like they don't belong, so acknowledging their expertise and accomplishments is key, as is reminding themselves that they earned their place in their academic or professional environment.

People should stay focused on measuring their own achievements, instead of comparing themselves to others. Similar to perfectionists, people with impostorism often put a lot of pressure on themselves to complete every task flawlessly; they fear that any mistake will reveal to others that they aren't good or smart enough for the job.

They perpetuate this excessive pressure because they believe that without the discipline they won't succeed and, instead of rewarding themselves, they only worry about the next task ahead. This cycle can be hard to break, but part of doing so involves reminders that no one is perfect and that a person can only do their personal best.

Why is it important to fight imposter syndrome?

Imposter syndrome can stifle the potential for growth and meaning, by preventing people from pursuing new opportunities for growth at work, in relationships, or around their hobbies. Confronting imposter syndrome can help people continue to grow and thrive.

How do you overcome imposter syndrome?

Reflecting on your concrete achievements, sharing your feelings with a loved one (preferably outside of the setting in which you feel impostorism), expecting to make mistakes at the beginning of a new experience, and seeking out a mentor who has charted a similar path are a few of the concrete steps that can fight imposter syndrome.

Who should people with imposter syndrome turn to for support?

In certain situations, turning to a colleague or mentor who understands one's feeling of insecurity can be advantageous. But research suggests that reaching out to people outside of one's academic or professional circle may be a better tool to combat impostorism. Those individuals can put the person's concerns into context, recalibrate their perspective, and offer support and love.

How can you prevent your child from developing imposter syndrome?

Two types of messages can spark imposter syndrome in children: constant criticism, which makes them feel like they'll never be good enough, and universal, superlative praise ("You're the smartest kid in the world!"), which instills high expectations and pressure. Parents can prevent imposter syndrome by praising effort not outcome, and by helping children realistically understand their strengths and weaknesses.

---