‘LauraLynn has done so much for us, the least I can do is get out of my comfort zone’

A brave mum who took part in a special performance of Riverdance in The Gaiety Theatre last year having never danced before is now planning to jump out of a plane for charity!

Last summer Monika Cwiok from Dunshaughlin along with four other mothers took part in a very special encore of the world-famous Irish dancing ensemble, to help raise funds for Ireland’s only children’s hospice LauraLynn.

Monika says LauraLynn has been a lifeline for her family, always ready to “pull out the stops” to help with the care of her son teenage Daniel who has a life-limiting condition.

The mum of one originally from the UK had fewer than 10 hours’ rehearsal over two weeks, before taking to the stage in front of a packed crowd in the Gaiety Theatre last June while her son looked on.

"It was amazing experience, I'm originally from the UK, I had never done Irish dancing in my life but it's a moment I will remember forever," said Monika.

This time around fearless Monika is going to take on a skydive for LauraLynn as way to give back as she explains:

"I think I must be mad but LauraLynn has done so much for us, the least I can do is get out of my comfort zone. Collette Lernihan, a healthcare assistant from Trim who comes in to help with Daniel came up with the idea so we are going to do it together!

Doctors told Monika that Daniel who attends St Vincent's Special School in Dublin wouldn't live past the age of three but now fourteen, the proud mum describes her son as “a fighter.”

“Daniel is classed as having a life-limiting condition, he is undiagnosed still today," said Monika. "He suffers from severe epilepsy, he's wheel chair bound, non verbal and tube fed and he is on ventilation at night.

"We were told that Daniel wouldn't survive past the age of three. He's a real fighter, he's my world. I would be lost without him."

The assistance provided by LauraLynn has been invaluable according to Monika.

"Daniel is under the care of Temple Street and he avails of respite with LauraLynn.

"I don't have any family. My parents passed away when I was in my 20s and I don't have any siblings so LauraLynn are basically our life saver. It's the only place Daniel can go and be looked after to get a bit of a break.

"LauraLynn apart from offering valuable support, you know it's somewhere you can leave your child safely."

The youngster underwent surgery last year to have his right femur bone removed, a time when the children's hospice stepped in.

"Last year was absolutely horrific, after Daniel's surgery, he was in horrendous pain and he was placed under the care of a palliative care consultant. We had a home care package allocated by the HSE but it's very hard to get nurses.

"He had his surgery in July and didn't properly go back to school until after Christmas. I work full-time as well so it was a real balancing act and LauraLynn stepped in and helped us out. They are Daniel's second home."

Daniel wasn't meeting milestones as a baby spurring Monika on to get medical help as she explains:

"When he was a couple of months old we started noticing that Daniel was regressing in his development. He seemed to sleep a lot and things that he could do he seemed to withdraw from.

"The first doctor I brought Daniel to told me he was just a lazy baby and to put him on his tummy and he would eventually crawl but it wasn't the case and I ended up bringing him into hospital.

"They did an EEG on him and at that stage they could see the seizure activity he was having. He was having up to 100 infantile spasms a day. He's still undiagnosed until this day despite assessments and investigations.

"You think that you have a normal, healthy child and then you find out that's not the case and it's a massive learning curve. We probably spent the first couple of years of Dan's life in Temple Street. He suffered a lot with chest infections, aspirations, seizures, then we found out he couldn't eat so he had to have a peg tube put in.

"Dan doesn't sleep through the night, he will wake three or four times. It could just be him waking, it could be seizure activity. He's had a good few serious ICU admissions in 2019. He frightens everyone to the extreme and then he bounces back. He's been through a hell of a lot, no child should go through as much as he has."

Despite numerous tests, the nature of Daniel's condition is still a mystery.

"He's under the care of Temple Street so anything new that comes up, any genetic screening they test Daniel for but he just tests negative for everything. They think that probably at some stage it will be a new syndrome. They have literally tested for everything out there that they can think of that Daniel has the characteristics of. He's had gene sequencing done and it keeps bringing up nothing.

"It's a frightening thing, knowledge is power when you sort of know what you are dealing with, you know what to expect but we live with the unexpected. For me it's all about Dan having the best quality of life, we try to do as much as we can and make the memories and make his life as good as it can be."

Making memories is Monika's forte and when she failed to find a hot air balloon company that would facilitate Daniel's needs, she decided to make her own!

"I ended up making a big basket and I painted the kitchen wall blue with clouds. I thought if Dan can't go to the hot air balloon, the hot air balloon will come to Dan!

"When people see us out, they say Daniel you've got a great mum you'd be lost without her but if I didn't have him I wouldn't know how to exist."