Odette O'Brien is a bright and beautiful four-year-old girl living with spastic diplegic cerebra palsy.
The four-year-old suffers from poor balance and requires a walker. Odette, known to family and friends as Odie, also requires daily assistance with tasks such as dressing herself and going to the bathroom.
Her County Louth-based family describe her as "cheeky, beautiful, and bright". Her cerebral palsy is caused by a condition called periventricular leukomalacia, essentially as injury to the white matter of the brain. Odie was also born with a heart condition.
Although cerebral palsy is a permanent life-long condition, some of the debilitating symptoms can improve over time. Odie's devoted parents Joan and David help her with daily physiotherapy and stretching to try and reduce the leg splints and muscle pain. Joan is a newly-graduated midwife, and David has been largely a stay-at-home dad since Odie's birth while Joan obtained her midwifery qualification.
Because these conditions will worsen over time, and Odie's pain may leave her wheelchair bound, her family are desperately trying to raise money to send her to St. Louis Children's Hospital in Missouri. At the hospital, world-renowned neurosurgeon Dr. T.S. Park, considers Odie to be a candidate for selective dorsal rhizotomy (SDR) surgery.
According to her GoFundMe page, this life-changing surgery involves the cutting of nerves in the spine which connect the brain to the muscles in the legs in order to permanently reduce the tightness and pain, and allow for walking. it is not performed in Ireland and there is no funding from the Health Service Executive.
Dr. Park and his team believe that SDR will permanently reduce Odie's spasticity, improve her balance and level of comfort, and give her the potential to achieve independent walking. However the brave little girl will still need long-term intensive physiotherapy to maintain the benefits.
The determined family are attempting to raise €100 000 ($117,000) to cover the cost of the operation, therapy requirements, follow up treatments, and travel to and from the US ahead of a surgery date scheduled for June 2019.
To find out how you can contribute, visit Odie's GoFundMe page here.