Trim family ready to celebrate a very special and precious Christmas together

A TRIM family who were delighted to be able to bring their little boy home from hospital for Christmas last year is backing The Jack and Jill Children’s Foundation's Christmas Appeal.

Parents Anne-Marie and Derek Inglis know all too well the elation of being able to have their child home for Christmas. Their beautiful little boy, Alfred (2), requires 24/7 care and was discharged from hospital on 23rd December last year, enabling him to be at home with his big sister Emilia (10), and big brother Louis (7), making memories as a family.

The Jack and Jill Children’s Foundation hopes to raise €1 million through its ‘Home for Christmas’ Appeal which will directly fund 55,000 hours of in-home nursing care to support children with highly complex and life-limiting medical conditions, allowing them stay at home, in their community, where they belong.

Alfred is one of 11 children currently supported by Jack and Jill in Meath. In fact, a total of 111 families have been supported by Jack and Jill in Meath since the charity’s foundation in 1997.

Alfred Inglis’ story echoes the extraordinary challenges faced by many Jack and Jill families. Following his birth, his mum Anne-Marie was concerned that “something wasn’t right, and after several seizures as a new baby, Alfred was referred for tests.

At four months Alfred was diagnosed with epilepsy, but the major concern was to investigate what was causing the epilepsy and as such, he underwent further genetic testing. In March 2022, it was confirmed that Alfred has COL4A1 Syndrome – an extremely rare mutation of a gene affecting collagen around the brain and other organs, causing brain malformation, global development delay and visual impairment. Alfred is one of only approximately 500 in the world diagnosed with this condition.

Mum Anne-Marie explains, “There is so much unknown about Alfred’s future. We deal with his needs as they present themselves.

In September 2023, Alfred had surgery to fit a PEG feeding tube into his stomach. He now is also on a BiPAP machine to help his breathing while he sleeps.

In Autumn 2022, the family became involved with The Jack and Jill Children’s Foundation. “We didn’t quite understand what Jack and Jill actually did. We thought the service was for extremely ill children and didn’t even consider that Alfred needed this level of support, so that was big to understand and accept. Up to that point, it felt that we were living two different lives and in two different worlds – life in hospital with Alfred and life at home with our two other children. We were trying to save our energy for Emilia and Louis and, despite all the fabulous help and support from friends and family, it was exhausting”.

Within days of putting in an application to Jack and Jill, Anne-Marie met with Liaison Nurse Manager Anne Reilly.

“In no time, we had a nurse coming to the home for up to 64 hours a month, helping with Alfred and giving us some much-needed time out to focus on other things, like work and also to spend some quality time with Emilia and Louis, knowing Alfred is well cared for at home.”

Alfred got Covid twice last year and was hospitalised for four weeks on one of those occasions. Thankfully, Alfred was released to go home for Christmas on 23rd December 2022. “ It broke my heart to be away from Emilia and Louis in the run up to and during Christmas, but thankfully, we all got to spend Christmas together”.

Alfred now has a good quality of life, loves interacting with people and is a much happier little boy.

This Christmas, members of the public can give the gift of time to families cared for by Jack and Jill, like Alfred’s family, with a Christmas donation or a gift purchase from a wide range of stunning gifts translating into in-home nursing care hours for local children and their families across the country.

Shop the collection now on www.jackandjill.ie