Galway mum is honoured for her dedication

A young Galway mother – honoured for her commitment to caring – has revealed her frustration over the lack of services for her nine-year-old son who suffers from a rare genetic disorder.

Martina Hynes from Tuam, who was last week named the Galway Family Carer of the Year, says that looking after young Joe is both rewarding – but, at the same time, frustrating because of the lack of support.

She said that she was honoured at having been chosen as the award winner having been nominated by close friend Noreen Ward who is also part of a sporting group that cater for children with needs on a weekend basis.

Martina and husband Dermot from Parkview Drive, Tuam, have – along with other young mothers with children who have challenging conditions – been campaigning for better and more frequent services from the HSE.

Joe was diagnosed with learning difficulties from an early age and was subject to epileptic fits until medication controlled this around a year ago.

While he is attending primary school in Tuam and is part of a local rugby programme for children with challenging conditions, he is full of the joys of life and is looking forward to what mum Martina hopes to be a normal life.

Joseph has SETD1B, a neurodevelopment disorder that includes absent seizures, global development delay, language delay, intellectual disability, autism as well as behavioural issues.

On one occasion, Joe was cycling from his home and wanted to turn a particular direction but was unable to do so and ended up in the middle of traffic on the main road. “He was very lucky,” admitted Martina, who is also the mother to seven-year-old Dylan.

She has subsequently discovered that there are only eight children in the country with Joe’s particular condition and this has intensified her demands for treatment and care for their child.

Martina was nominated by close pal Noreen Ward for the award and said that she was astounded that she was chosen. She added that it wasn’t something that she even contemplated on receiving.

“We just want Joe to have the treatment he deserves and that hopefully he can go on to live a normal life. It is very difficult for him but certainly more manageable with medication.

“However, the occupational therapy, physiotherapy, psychology and every other treatment he requires has not been available to him for the past two or three years because of Covid.

“That is when it becomes difficult as he desperately needs these services and there is nothing we can do to compensate,” Martina told The Connacht Tribune.

Martina cares for Joe while husband Dermot is a long-distance lorry driver in Dublin but they are hoping that the HSE can provide them with some assistance in the not too distant future.

“Martina is always there to support her friends, helps out at the local inclusion rugby club, and that nothing is too much for her,” said her nominator Noreen.

Joe is a member of the Little Rascals Rugby Club in Tuam which is for kids with physical and psychological challenges, and they were delighted when the then Ireland head coach Joe Schmidt paid them a visit for a training session.

“They will never forget that experience,” Martina recalls.