An independent life

Posted on: 8th March, 2016

Category: Features

Contributor: West Cork People

Culann, Darragh and Anna May Cashman, four-year-old triplets from Midleton, Co. Cork, were born three months prematurely on St Valentine’s Day 2012, weighing about a kilo each (Anna May was the heaviest at 1.9 kilos). Two of the three siblings, Culann and Dara have been diagnosed with cerebral palsy and last November, their parents, Yvonne and Gary Cashman, launched a fundraising campaign to raise the €75,000 needed to ensure Culann receives a highly specialised operation in England to help him walk and lead a more independent and pain-free life. 

Yvonne, a public health nurse, originally from Bandon, and Garry, a garda, who are also parents to Gearóid, nine, have been overwhelmed by the help and support they’ve received since launching the appeal. Their target has been reached in record time. Culann’s operation is due to take place in May under Dr John Goodden of the Department of Neurosurgery in The Leeds Teaching Hospitals.

Culann has cerebral palsy with spasticity affecting both lower limbs and right upper limb — hypertonic cerebral palsy. His brother Darragh has been diagnosed with hypotonic cerebral palsy, which results in low muscle tone. The boys have different needs and requirements but thanks to Enable Ireland’s early intervention services, they both get regular physiotherapy, occupational therapy, and hydrotherapy. Both boys also do hours of physiotherapy on a daily basis at home.

The Cashman family

The Cashman family

At present, Culann wears a dynamic movement orthoses suit to prevent his hips from dislocating and to keep his legs and pelvis aligned correctly. He cannot stand or walk independently; he has to be turned regularly throughout the night, as he cannot turn himself; he cannot get on or off a toilet independently; he cannot get in or out of his bed independently; and he needs assistance to include himself in play with the other children in playschool.

Culann’s operation in May will be lifechanging.

“Even something as simple as putting two thumbs up is difficult for Culann,” says Yvonne.

Dr Goodden says he is excited by the prospect of what a surgical procedure called selective dorsal rhizotomy (SDR) can offer Culann.

The surgery, which involves the cutting of selected nerves travelling to Culann’s legs, will be followed by a two-year intensive physiotherapy and rehabilitation programme to maximise Culann’s potential.

A former neo-natal nurse, Yvonne says she was aware of the potential complications of carrying multiples but delighted to be expecting more than one baby. The triplets were born prematurely at 28 weeks when Yvonne went into spontaneous labour. “I had worked with a lot of the people surrounding me during the birth, which was reassuring and comforting at the time,” she says “and I was delighted that none of the three needed active resuscitation when they were born.”

Anna May was very sick for the first few days of her life and only survived, according to Yvonne, because of the care she received in the neo-natal unit at CUMH.

“Once all three had stabilised, it was a very positive experience in the neo and we’re very grateful to all the staff for the care our children received there,” she says.

The triplets were allowed home after eight weeks and the next six months passed in a whirlwind of feeding and nappy changes.

At about six months, Yvonne became concerned when she noticed Culann making a clenched fist.

She got Culann assessed and he was later diagnosed with spastic diplegia cerebral palsy.

“I remember Prof Ryan telling us about Gardner’s theory, which suggests that we all have a special gift,” says Yvonne. “That was a gold nugget of hope for us…that every single child, even if they have a disability, has some kind of gift.”

A few months later, when the triplets were about a year old, Yvonne felt that Darragh wasn’t reaching his developmental milestones and, after insisting on an MRI scan, her worst fears were confirmed when he was also diagnosed with cerebral palsy.

“We were devastated,” she says “I just went into overdrive…I felt I had to do everything I could to help them,” she says. “But then they started to make progress and their little personalities started to emerge. They started chatting, which was always one of my concerns. I suddenly realised that we weren’t seeing the disability…we were seeing the children.

“Although the boys weren’t crawling or sitting as well as Anna May, their personalities were just as bright and as vibrant.

“Yes, it’s hard at times. The little things like going to the supermarket with them are impossible. But your heart would break at the kindness they have for each other. They idolise their big brother Gearóid and he idolises them and they’re all there to hold each others hands when needed,” says Yvonne.

“We have the same fears as any parent. The first day they went to playschool was harder for us than for them. I remember watching the other children looking at them and staring. But you have to learn as a parent that this is just normal curiosity in children. A year later and none of the other children at playschool see Culann and Darragh’s disability or walkers any more.”

Throughout all the ups and downs, Yvonne and Garry have remained a united and strong couple. “I do think if we’re happy, the children are happy,” says Yvonne.

Life has taught this couple a lot over the past few years. “We’ve seen the kindness in people,” says Yvonne “and realised the value of people who really want to help you out.”

“We’ve also come to appreciate that health is wealth; when you have a child with a disability you appreciate the simple things in life more.

“My own mum died when I was very young…life teaches you that you’ve two choices — you can either get up and get on with it or you can lie down and let it all fall around you. We have four children we’re responsible for and we’re not always going to be around. So for us, it’s about making them as independent as possible. I’d hope there is very little that they won’t be able to do — the sky is the limit.”

For more information on Culann and fundraising events go to www.culannwantstowalk.com or follow on facebook.

 

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