Darcey had SDR Surgery at Great Ormond Street back in April 2021. Just4Children need to fundraise for her rehabilitation involving intensive physiotherapy, hydrotherapy and other associated strength building activities.
‘Cerebral Palsy’ and ‘Brain Damage’ are the only words I absorbed on the day of Darcey’s diagnosis. We had suddenly entered the world of ‘disability’ and it was scary. Never do you think you would have the ‘disabled’ child who wouldn’t necessarily lead a ‘normal’ life.
Darcey is aged 7 from Broughton in Bucks. She was born on 27th December 2015, slightly earlier than planned but longed for all the same. We enjoyed 10 months of achieving certain expected milestones, until we realised that certain physical activities were not being met around the 12 month mark, for example crawling and sitting up confidently.
Months later and following many tests, scans, procedures, and lots of prodding and poking for Darcey we were soon to be diagnosed with ‘Pentrivicular Leukomalacia’, this being the type of brain damage Darcey had suffered with, most likely due to a lack of oxygen at some point throughout pregnancy. Under this diagnosis umbrella are many symptoms due to the brain damage and Darcey’s symptoms are ‘spastic muscles’ therefore, falling into the Cerebral Palsy bracket.
We class ourselves as extremely lucky NOT unlucky as Darcey’s only real restriction is physical. She has no issues with her speech nor movement on her upper body which is of course a huge advantage. For those of you who know Darcey you will know that she is able to walk, however, not for long as she falls to her knees! Those poor knees of hers have taken some serious battering over the years!
Darcey has endured lots of physiotherapy, hydrotherapy, swimming, horse riding and also a course of Botox injections. Darcey walks with a tip toe left foot and is unable to flatten her foot the majority of the time. She does wear splints to help this. Whilst all of these ongoing treatments have assisted with her core strength and improved her walking ability immensely, she is still unable to balance and stand unattended which is a huge concern.
We long for her to be independent and ‘stand on her own two feet’ especially when starting school.
As you can imagine after two hopeful visits to Great Ormond Street, and eventually being given a ‘yes’ to the SDR procedure means we can show finally show some positivity for Darcey’s future physically and see the light at the end of the tunnel. This procedure will hopefully enable Darcey to walk for further, balance and maybe even run around with her friends one day! But despite our luck with the surgery being funded unfortunately to give Darcey the best results from the surgery we need to ensure her post operative care is second to none, which means paying privately for a majority of the follow up treatments alongside some NHS coverage too.
We are looking to have to fundraise for Just4Children for 2/3 sessions a week at least for the first 6-12 months. We thank our amazing friends and family for their amazing support.