Mums Who Inspire

'My heart breaks each time' - Mum's account of her daughter's long term illness

As part of our Mums Who Inspire series, we sat down with mum-of-three, Carina Conyngham, to learn more about her family's journey to having her daughter diagnosed and the importance of raising awareness of Rett Syndrome. If you have a story that you would like to be featured, email mumswhoinspire[at]

Do you know what Rett Syndrome is? Carina Conyngham knows, because she's been living with the signs for almost six years. 

Her daughter, Laragh, has Rett Syndrome. And she's not the only one – one in every 10,000 girls are suspected of having the same condition. 

That would be a possibility of 330 girls in Ireland alone who suffer from a condition not a lot of people have awareness of, with only 70 girls actually diagnosed.

Speaking to MagicMum, Carina reveals, the Conyngham's are a busy family; Carina runs her own business on their organic farm in Slane, while her husband Alex owns his own whiskey business at Slane Distillery, and that's before you factor in their family life with their three children. 

Parents to eight-year-old Laragh and her younger brothers, Ruairi and Casper, the couple have had a long battle to get to the bottom of their daughter's condition. 

When Laragh came into the world, she was a perfectly healthy baby, who showed all the signs of growing and developing. 

However, when she was just three-years-old, the young tot had begun to walk 'funny', her mum noticing that something didn't seem right. 

"She had started to lose words as well, we brought her to a speech and language therapist and then a paediatrician in Temple Street, he noticed her hands were ringing, that was the first sign."

Nonetheless, when the testing completed in 2013 came back negative, the Conyngham's were informed their daughter had some global delays, but they should 'get on with life' as normal. 

Carina stated: "You don't get any help in Ireland without a label, and we were determined to get to the bottom of it, we linked up with Enable Ireland who were a great help."

Determined to aid their daughter, Alex and Carina brought their youngster to the Portland Hospital in London, where within a day they were told their daughter had the MECP2 gene – Rett Syndrome. 

The diagnosis came in January 2015, two years on from the time they had first noticed Laragh's symptoms.

While having your daughter diagnosed is a scary experience for the parents, Mum admits it was also a relief to know what was wrong following an arduous two years. 

"There's a lack of diagnosis in Ireland for neurological disorders, it was a long journey. It was devastating to find out because of the long term complications, but the benefits outweigh the disadvantages."

"Early diagnosis brings support, you can work with the kids, you can join the association and learn from one another," commented Carina. 

Carina and Alex immediately linked up with Rett Syndrome Association of Ireland where they have found a comfort in knowing the organisation raises funds for Reverse Rett, who are working toward a cure for the syndrome. 

The regressive condition which almost exclusively affects females, impacts both physical and intellectual skills, as the condition is characterised by normal early development then followed by a regression period, where many skills are then lost. 

Laragh's diagnosis is a rare, mild variant with preserved speech, but her condition continues to require a lot of help, with 24 hour care a necessity for the young girl and her family. 

Speaking of her brothers, the mum reveals: "The boys don't think any different of her, it's all they know, but they do tend to be more patient, this is their normal, they're quite independent as a result."

"It can be frustrating for her, especially when she can't tell us what is wrong, or what she needs."

Laragh's grandfather, Lord Henry Mount Charles, has illuminated his residence at Slane Castle the colour purple which is representative of the syndrome, in honour of his granddaughter. 

As the castle lights up during Rett Syndrome Awareness Month, Carina explains the emotional affect the association has on her, as everyone's struggle is different.

"My heart breaks each time I go to the association. Some people have to sleep in with their children full time for fear of seizures, you never get a break. It's a real struggle."

"While it's amazing to be part of the community, we can't help each other out physically as we all need all the help we can get."

The mum-of-three is also encouraging any parents with a niggling feeling to pursue their gut: "If you have that intuition that hasn't been explained, reach out to all organisations and you will find what you're looking for."

Rett Syndrome Awareness month runs throughout October, with Slane Castle being just one area showing support for the organisation, you can too – just click here for more information. 

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