independent

Saturday 23 March 2019

Aideen (5) to receive life changing surgery in UK

Oisin, Aideen, Joan and Conor Fanning
Oisin, Aideen, Joan and Conor Fanning

Deborah Coleman

An Aughrim girl is to move closer to realising her dream of dancing as she has been accepted for life-changing surgery in the UK.

Aideen Fanning (5) and her family, parents Joan and Conor and brother Oisin, received the news recently that she is to travel to Leeds for an operation that is hoped will improve her ability to walk and to be independently mobile.

When Aideen was nine months old she was diagnosed with periventricular leukomalacia (PVL) a type of brain damage that affects motor function which occurred in the womb.

She also has Spastic Diplegia Cerebral Palsy, which is characterised by increased muscle tone in both her legs and trunk area. Her muscles continually contract, making limbs stiff, rigid, and resistant to flexing or relaxing and Aideen requires adaptive equipment for mobility.

'Aideen is classified as having a gross motor function level III, which means she requires adaptive equipment for mobility,' explained her mum Joan. 'At present Aideen requires a little kaye walker to walk indoors, while using a wheelchair for mobility outdoors, in the community and at school; she can sit on her own or with limited external support; and she also has some independence in standing transfers.

'Aideen is a very strong minded little girl who loves to be included in the many childhood playground activities. She loves bouncy castles and playing in those kid zones, but due to her spasticity, joining in these simple adventures is not always possible.'

With the news of Aideen's acceptance for surgery, the Fanning family has been given a great sense of hope of the progress Aideen could make afterwards.

Aideen is just one of a handful of Irish patients to have been accepted for surgery this year. Her surgery is being made possible through Enable Ireland.

The surgery involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord and most patients show an improvement within two months.

However, adequate aftercare is vital in ensuring that Aideen can reach her potential and a GoFundMe.com account has been opened to try and cover the €30,000 cost of what will be required.

Without regular physiotherapy and the necessary equipment, Aideen will not have the best chance possible to reach her post-operative potential.

The HSE does provide a certain amount of aftercare but this varies from area to area and the Fannings want to ensure that Aideen, who they describe as their 'little ray of sunshine', is given the best chance possible.

'This target would cover up to two and a half years of physiotherapy but it's not even necessarily funding that would help, but even somebody who could help us make the necessary modifications at home, or somebody who would be qualified to offer physio sessions. With proper aftercare and intense physiotherapy and less spasticity we could help improve Aideen's life completely. With the spasticity removed, Aideen's posture and gait should improve dramatically aiding her to achieve great flexibility and mobility to what she currently has,' says Joan.

To lend support to Aideen visit gofundme.com/adreamsofdancing

The family has extended thanks to everyone who has already offered support through donations and fundraising events.

Wicklow People

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