Peace of mind

My grandson Romey Terrence Lloyd was born on the 28th of January 2023 being 5 weeks prem. He was born with a very rare genetic condition called Deletion 6p. His parents have been told that with his 42 missing genes, of these we only know the function of 10. the other 32 are unknown he is the only one in the world as other children born with this disfluency have fewer genes missing.

Romey's condition is complex, there are only a few disabilities known for this condition, his disabilities known so far is having

Branchio-Oculo-facial syndrome

Distinctive facial appearance

Unilateral coloboma

Branchial haemangiomas

Cystic renal disease

DSP deleted- at risk of Arrhythmogenic ventricular

High-risk problems with growth, learning difficulty

Ventricular septal defect

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 9 weeks of his life in the hospital starting at Hereford then to Birmingham then finally up to Halderhay in Liverpool. Romey's parents Kim & Chris have found all this extremely hard as Kim has 3 other children Mckenzie is 13 years old also Aroura being 5 and Rory just turned 4. Being away from them for 9 weeks was unbearable for Kim, but she knew she didn't have a choice as she needed to be with Romey. It was such a joyful day when Romey was finally discharged on the 30th of March. 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 thou she manages.

Last night 27th April Romey was rushed to Birmingham PICU (pediatric intensive care unit) as he was having respiratory problems. He was put into an induced coma so that his tiny little body wasn't struggling. 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.

The reason for this go fund is that we don't know what will happen to Romey one day to the next, but for Kim and Chris's peace of mind, there is a monitor that can do readings of the heart rate oxygen levels and also a camera. If Romey's levels change at all, it sends signals to Kim and Chris's 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 9 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 has just been told by the hospital that yesterday 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 of 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.