Just4Children need to raise monies for Cora’s SDR surgery to allow her the chance to lead a life without limitations and free from pain and discomfort.
Our daughter Cora was born prematurely at 31 weeks following a healthy, uneventful pregnancy. Despite a difficult birth, she entered our world, battered and bruised on the 16th November 2015 weighing a tiny 3lbs 12oz. She continued her fight and took her first gasp of air after the longest, most frantic two minutes of our lives and, following that, spent 6 weeks in the Special Care Baby Unit at Ysbyty Glan Clwyd until we were allowed to take her home on Christmas Eve to enjoy her first Christmas at home.
Shortly after her first birthday, we began to worry that Cora wasn’t reaching her gross motor skill milestones as she couldn’t roll over or crawl. An MRI scan in February 2017 revealed that she had Periventricular Leukomalacia (PVL), a form of brain damage in the area that controls muscle tone and movement of the arms and legs. This resulted in her being diagnosed with cerebral palsy, a condition that affects coordination and movement and with her for the rest of her life.
Cora has spastic diplegic cerebral palsy which means that her leg muscles are stiff and in a constant state of ‘spasm’, preventing her from being able to flatten her feet resulting in her walking on her toes. Now, at 22 months old, Cora is unable to stand or walk independently due to this spasticity and, even the most basic of movements, those we take for granted, are a challenge for her.
But, we have hope in the form of Dr T.S. Park from St. Louis Children’s Hospital, USA, who is the pioneer of a procedure called Selective Dorsal Rhizotomy (SDR). This will permanently remove all of the spasticity in Cora’s leg muscles and help her to build muscle so that she can learn to walk independently, improve her posture and gain ‘flat feet’ which will hopefully mean that one day, she too can run around with her friends.
This operation is not funded by the NHS. The cost of the surgery will be in the region of £50,000 and that excludes the cost of the intensive physiotherapy and equipment that will be needed post SDR upon our return to the UK to build up her muscle strength.
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