Periventricular leukomalacia, or PVL, is a type of brain damage that involves the periventricular white matter of the brain. Damage to the white matter results in the death and decay of injured cells, leaving empty areas in the brain — called lateral ventricles, which fill with fluid (a condition called leukomalacia).
The brain primarily consists of white matter and grey matter. Grey matter has neural cell bodies, which can initiate nerve impulses, while white matter transports impulses between grey matter cells. The periventricular white matter that surrounds two horseshoe shaped cavities in the brain is primarily responsible for the transmission of nerve impulses that control motor function. Damage in this area can result in spasticity and intellectual impairment.
Approximately 60-100% of infants with periventricular leukomalacia are diagnosed with Cerebral Palsy.
Aideen has Spastic Diplegia Cerebral Palsy, which is characterised by increased muscle tone (or spasticity) in both her legs and trunk area. Her muscles continually contract, making limbs stiff, rigid, and resistant to flexing or relaxing.
Aideen is classified as having a gross motor function level III, which means she requires adaptive equipment for mobility. 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, however due to her spasticity joining in these simple adventures is not always possible. Even simple things like dressing and toileting for Aideen requires assistance.
However on the bright side, and the reason for this funding page, Aideen’s Enable Ireland support team have been able to refer her to Leeds for a life changing operation called Selective Dorsal Rhizotomy (SDR), as this operation is currently not available in Ireland. SDR involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord. With spastic diplegia this operation will assist in the reduction of spasticity. Results have shown that within 2 months most patients show motor performance exceeding preoperative levels.
However the SDR surgery is worthless without a lot of hard work and therapy in the months and years after the operation. The HSE do provide some level of care after the operation, but this varies from area to area and is unlikely to be enough to really maximize the results for Aideen.
During this critical time we will need to fundraise is order to provide and necessary equipment and private physio therapy for successful aftercare for Aideen. Overall, we estimate our target to be €30,000, which would cover some rehabilitation equipment and about 2 years’ worth of physiotherapy afterward.
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 & mobility to what she currently has. Self-toileting and self-dressing are 2 of the main goals we are hoping for as a result of this surgery, anything more is a bonus J
Any donations will be received most gratefully…
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