Tom Clonan: ‘I defy the board of the CRC to explain its obscene behaviour to my son’

My son attends the Central Remedial Clinic in Dublin. Eoghan is 11 years old and suffers from a rare and serious neuromuscular disease. He was a healthy baby boy and did not develop symptoms until he was about 14 months old.

A slight intention tremor in his hands.

A gradual loss of gross and fine motor function in his arms and legs.

As young parents, we were devastated. We were terrified.

Eoghan’s symptoms continued apace. After numerous visits and consultations in Temple Street Children’s Hospital – including MRI scans and other invasive procedures – we were referred to the Central Remedial Clinic.

After suffering the trauma and grief associated with Eoghan’s diagnosis, the clinic became an oasis for us. Over the past decade, the frontline staff there have become a part of our extended family.

Constant care
Eoghan requires constant physiotherapy, occupational therapy, speech therapy, hydrotherapy and ongoing paediatric, neurological and surgical review. All of the staff at the clinic are exceptional.

The manner in which they interact with Eoghan is warm, playful, magical.

It has been a long journey for our little boy. He is a fighter and now attends our local national school with his assistance dog, Duke. He faces his multiple challenges with grace and dignity.

He and I do physiotherapy and stretches in his modified bed every morning at about 6am; his legs and arms are warm after his night’s sleep. Duke watches us from the floor, tail thumping gently on the rug. We call it our “quality time”.

In the last few years, we have seen Eoghan’s services cut back due to reductions in funding to the HSE. This is in line with the government’s austerity programme. Eoghan has also experienced long delays in the supply of vital equipment such as ankle-foot orthoses (AFOs) and his wheelchair.

These delays are not the fault of the staff at the clinic. They constantly chase and push the HSE for supply. In turn, the HSE staff do their best under increasing cutbacks and downsizing.

Eoghan outgrew his manual wheelchair in 2012. In February 2013 we got a prescription and approval for a new chair. It arrived last week – almost one year after Eoghan needed it.

For 12 months, Eoghan was obliged to use a wheelchair that was too small for him. In the name of austerity and cuts to the health service, Eoghan’s legs began to curl back on themselves.

The contractures in his limbs deteriorated. His feet also began to curl inward. The staff at the clinic worked miracles with their counterparts in the HSE to get replacement AFOs and intervened with physiotherapy.

Thankfully, after review by a surgeon, Eoghan did not require a surgical intervention to his legs.

As parents, we fundraise for the clinic. Sell Santa bears at Christmas. Donate to the Care Trust.

The revelation that €742,000 – almost half of the annual fundraising effort by CRC volunteers – was used by the board towards the remuneration of the chief executive is heartbreaking.

Heartbreaking
It is heartbreaking for us as Eoghan's parents – in the context of ongoing cuts to the disabled and carers. It is heartbreaking to the frontline staff of the clinic who knew nothing of these arrangements.

The behaviour of the board of the CRC is symptomatic of a toxic political culture of cronyism and entitlement.

Responding to the debacle, Taoiseach, Enda Kenny said it was "indicative of a time in Irish politics" that he hoped was "long gone".

I defy Enda Kenny to explain the value of austerity to my son Eoghan. I defy him to look my little boy in the eye and justify cuts to the services and supports of the disabled and carers. I defy the board of the CRC to explain its obscene behaviour to Eoghan.

Oh, and in the meantime, give the money back.