Family of boy born with two rare syndromes raise funds PRUH

The family of a boy who was born with two extremely rare syndromes are raising money for PRUH in appreciation of the “incredible” treatment he received there.

One-year-old Roman Giles is the only known person to have been born with Keelfstra and Williams syndromes, which are likely to leave him severely physically and intellectually disabled.

Parents Adam and Suzy are raising money for the Special Care Baby Fund to pay tribute to the staff who helped them through their “darkest days”

Adam said: “Life has been full on since Roman was born, and we both struggle to put into words what the PRUH did for our son.

This Is Local London: Roman Giles spent 11 of his early weeks at PRUHRoman Giles spent 11 of his early weeks at PRUH

“The staff and facilities are unbelievable; they went above and beyond, supporting not only Roman in an unreal amount of ways, but also us as parents through the darkest of days.”

Roman spent 11 weeks at PRUH before he was able to come home, following his birth in February 2020.

His parents have been to countless appointments, tests, procedures and even surgeries during his short life.

He currently has regular appointments in all the relevant medical departments and weekly sensory sessions with a 1-1 from a vision team.

There are also regular physiotherapy sessions and regular feeding advice working on trialling small amounts of purée.

Suzy said: “It’s hard to know what the future holds for Roman as there is no known case in the world of anyone having the combination of syndromes that he has.

“He may never be able to walk or talk. His low muscle tone means he is nowhere near sitting, he is still working on head control.

“He is currently non-verbal. He is fed via a feeding tube.”

This Is Local London: He is the only known person in the world to have been born with two rare conditionsHe is the only known person in the world to have been born with two rare conditions

She added: “I will forever be grateful for the incredible help and support of all the doctors, nurses, therapists and staff that have helped Roman on his journey so far. The journey started in the special care baby unit and was possibly our darkest of days.

“Initially, we had no diagnoses and no idea of what was wrong. He was struggling in so many ways and the staff went above and beyond.

“They didn’t just medically look after him, they really cared. They supported not only Roman but us through an extremely hard time.

“It is this reason we want to give back and raise money for the special care baby fund who support babies in distress at birth and their families.

“It is a thank you for the help and support myself Suzy and Roman received at the start of his journey in life.

“Due to Covid we haven’t been able to go back and thank the team at the PRUH and thought this is a great way to give something back.”

Their Just Giving page, called Running for Roman, can be viewed here

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