A NETHERTON family have battled against the odds to see their little girl reach her first birthday.

Maebh Adams was diagnosed with the rare genetic condition Edward's Syndrome, shortly after her birth in January 2018 in Russell's Hall Hospital.

Around 95% of babies with the condition die in the womb or a few hours after birth but amazingly, Maebh celebrated her first birthday in January.

Maebh was diagnosed with the condition aged ten days old, a moment her mum Simone said provoked 'complete devastation'.

Her mum, explained how she experienced a 'normal' pregnancy with no cause for alarm.

Baby Maebh was born at 35 weeks, weighing only three pounds but it was not until medics noticed a problem with one of her ears and the movement of her hips that her condition and its severity was revealed.

Simon said: "We had gone from having a poorly tiny baby to having tiny poorly baby who we're not going to get out of hospital. We were being told about end of life hospice care."

At four weeks old Maebh was allowed to go home to be with mum Simone, dad Kevin and older brothers Regan, aged 5 and Brohgan, aged 8.

Since then the family have had to adapt to and learn more about Maebh's rare condition.

Simone has nothing but praise for the medical teams at Russells Hall Hospital who have care for Maebh and supported her family over the past year.

She said: "The nurses at the neo-natal ward were absolutely fantastic. Until you have been there and witnessed it you can't explain it.

"The support from the community team has been fantastic. I have respite sessions each week."

Maebh's journey has also been a first for the paediatric team at Russells Hall Hospital, with baby Maebh being one of the first babies treated at the hospital with the condition

Dr Sohail Nassir, Consultant Paediatrician at Russell Hall Hospital who oversees Maebh's care, said: "Edward’s Syndrome, also known as trisomy 18, is a rare genetic defect affecting about 1 in 5000 pregnancies. Around 95% of affected babies die in the womb or a few hours after birth. Only a small fraction of live births will make it to their first birthday and they are usually the ones with partial Edward’s syndrome unlike Maebh who has the full condition. Hence her journey is even more astonishing. She is the first and only baby that I have seen with this condition in my paediatrics career.

"We as a department wish her and her parents a very happy birthday having no doubt gone through some challenging times in the last year. We will continue to provide Maebh the most effective care and support here at Russells Hall hospital and hope she enjoys many more birthdays with her family."

The family marked Maebh's birthday with a special party with over 80 people who have impacted Maebh and her family's life joining in the celebrations.

Simone now runs a Facebook page called 'Maebh's Journey' which has hundreds of followers from around the world and records her daughter's progress with the condition while also raising awareness.

Describing Maebh's journey, Simone said: "She sparkles, she's started to become herself.

"Her smile is infectious."