Thursday 15 November 2018

'We want her to enjoy her childhood without pain' - family appeal for funds for 'life changing' surgery for daughter (4) with cerebral palsy

Odette 'Odie' O'Brien (4) has spastic diplegic cerebral palsy, affecting her mobility and ability to walk
Odette 'Odie' O'Brien (4) has spastic diplegic cerebral palsy, affecting her mobility and ability to walk

Rachel Farrell

A family from Drogheda are appealing for help to get their daughter to the USA for "life changing" surgery that will allow her to walk.

Odette 'Odie' O'Brien (4) was born with a heart condition called tricuspid valve dysplasia and Wolff-Parkinson-White syndrome. In January 2017, Odie was diagnosed with spastic diplegic cerebral palsy as a result of periventricular leukomalacia, which is linked to the heart condition.

According to mum Joan O'Brien, her "cheeky and clever" young daughter is unable to walk or stand up unassisted. She has to crawl around the home to get around, and her balance is poor. She needs assistance with normal daily activities like getting to the toilet and dressing herself. 

"On a day to day basis, Odie's cerebral palsy affects her mobility and ability to play. Her pain threshold is high because she has adapted to always having tight painful muscles," Joan told Independent.ie.

"Someone would lift her to bed, to the toilet, upstairs, into the car, and she can't dress herself either. Activity-wise, we do physiotherapy and stretching at home every day. Odie has different medical and therapy appointments at least once a week, and sometimes more."

 

Over time, it is believed that Odie's condition may deteriorate as the pain increases.

"The spasticity, or tightness in Odie's legs will increase, which means that her pain may also increase," Joan said.

"There is also the possibility that she may lose the ability to use her walker and will need a wheelchair."

As a result, the family have decided to travel to the USA for Odie's surgery in June 2019, to give their daughter the opportunity to live life to the full.

"Selective Dorsal Rhizotomy (SDR) is the only permanent solution to reduce spasticity in the case of cerebral palsy and also reduces pain. It's not routinely recommended in Ireland and therefore not funded by the HSE. 

"We self-referred to Dr. T.S. Park of St. Louis Children's Hospital in Missouri, the inventor of the surgery, on the recommendation of Odie's physiotherapist who has worked with her since she was two-years-old."

 

According to Joan, their daughter's illness has affected their lives in different ways, but they are grateful for the support from the rest of their family.

"David gave up work to be Odie's full-time carer, and she is our main focus. Her birth was also the catalyst to encourage me to change career areas and I went back to college to become a midwife and I'm finished my degree in five weeks time.

"Family members give lots of support in coming to appointments and looking after Odie to give myself and David a break."

Just over a week ago, the family launched a fundraising page called 'Odie Wants To Walk' to help raise the €100,000 required to get Odie to Missouri, and Joan says the support has "surprised" the family, who have been affected by their daughter's illness in different ways.

"We set up our Facebook page and GoFundMe ten days ago and we have been so surprised and touched by the support and interest so far.

"As we need to not only raise money for SDR, but potential orthopedic surgery, travel to the US and back, intensive physiotherapy in the US, orthotics post-op and long-term follow up therapies which are essential to maintain results of the SDR, we are trying to raise €100,000. 

"We really feel that this is the best way to give Odie the chance to walk, run, play and to just enjoy her childhood without pain."  

More information can be found on Odie's fundraising page here: https://ie.gofundme.com/odie-wants-to-walk

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