A BABY from Hereford who has a very rare genetic condition is in need of vital equipment that will help him and his family.

Romey Terrence Lloyd, who was born five weeks premature on January 28, has Deletion 6p. It is a chromosome abnormality that occurs when there is a missing copy of the genetic material located on the short arm (p) of chromosome 6.

However, Romey's parents, Kim and Chris, have been old that with his 42 missing genes, of these they only know the function of 10.

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"The other 32 are unknown - he is the only one in the world as other children born with this disfluency have fewer genes missing," said Paula Mantle, Romey's grandmother.

"Romey's condition is complex, there are only a few disabilities known for this condition.

"It is said in time Romey will teach medical professionals what the other missing genes mean as there is no evidence of this with anyone in the world."

Romey spent the first nine weeks of his life in hospital - first in Hereford then Birmingham and Liverpool.

"Kim and Chris have found all this extremely hard as Kim has three other children - Mckenzie is 13-years-old, Aroura is five and Rory has just turned 4," added Mrs Mantle.

"Being away from them for nine weeks was unbearable for Kim, but she knew she didn't have a choice as she needed to be with Romey.

Hereford Times: Romey LloydRomey Lloyd (Image: Paula Mantle)

"It was such a joyful day when Romey was finally discharged on March 30. The whole family were so happy that they were able to come home, but the first port of call before seeing the other children was to my father's funeral, Romey's great-grandad.

"My dad sadly passed away while Romey was in hospital and never got to see him.

"Since being home Romey has been quite unsettled at times and has been in hospital for bronchitis, also back and forth to the GPs. Kim's partner works away most weeks, so this is quite hard for Kim even though she manages."

On April 27, Romey was rushed to Birmingham Paediatric Intenstive Care Unit (PICU) due to having respiratory problems.

"He was put into an induced coma so that his tiny little body wasn't struggling," said Mrs Mantle.

"He had a chest x-ray which showed he had asperated, there was milk in his lungs, they have since been told that he also has pneumonia."

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A GoFundMe page has been set up to help pay for equipment to help Romey.

"There is a monitor that can do readings of the heart rate oxygen levels and also a camera," said Mrs Mantle.

"If Romey's levels change at all, it sends signals to Kim and Chris' phones. The product is called an Owlet monitor duo smart sock3 + camera, currently priced at £399.99.

"There is also a pediatric cot that elevates the head, this will help Romey aspirating. The special cot is very expensive.

"We have had a quote for over £5000, but its something that is needed.

"Financially, it has been hard for the family as Chris could not work for the first nine weeks. They were finally getting back on track and this happens.

"We don't know how long this time Romey will be in the hospital, but Chris is off work again to be with his son and Kim.

"Kim needs as much support as she can. It's a very frightening time for them, but the fear will never go away unfortunately because Romney's condition every day is different.

"If Kim had already had this device Romey would have been noticed straight away that something was wrong.

"Kim was told by the hospital that Romey's body was starting to shut down. I just thank god that Kim is very cautious when it comes to Romey as it could have gone undetected and had a different outcome.

"Romey will also need a pediatric bed to keep him elevated as we have been told that Romey is prone to aspirating, as you can imagine this is very scary. This is an amazing cot that will elevate his head.

"At the moment Kim is having to put towels underneath his mattress."