Two year old Aria Charalambous was born 6.5 weeks premature and weighed 4.6oz. It wasn’t until Aria started to become substantially delayed with her milestones when we started to suspect that something was very wrong. After various appointments with neurologists, orthopaedics and paediatricians, Aria was referred for an MRI.
It transpired that Aria had suffered a brain injury around the time of her birth known as Periventricular Leukomalacia (PVL). This in turn led to a diagnosis of Spastic Diplegia which is a form of Cerebral Palsy. Fortunately, Aria’s Cerebral Palsy is mild and through a lot of hard work and lots of physio, at 2 years old, Aria is slowly taking some assisted steps in her leg braces (AFOs).
The Cerebral Palsy which mainly affect Aria’s lower extremities (ankles and knees) means that she suffers with tightness and stiffness of the affected muscles. This makes it very difficult and painful for Aria to walk. Aria’s legs and foot posture are such that she does not have the stability to walk or run around like a child should. As Aria grows, the stiffness will eventually overwhelm her muscles and thus make it even more tiring and painful for her to walk. Without the surgery Aria needs, in years to come Aria is at risk of losing her ability to walk.
There is currently no cure for Cerebral Palsy. However, Aria has been accepted as an ideal candidate for a life changing surgery known as Selective Dorsal Rhizotomy (SDR) surgery at St Louis Children’s Hospital, Missouri, USA.
Unfortunately, Aria does not meet the criteria to have this procedure on the NHS. This surgery will dramatically improve Aria’s quality of life. SDR is currently the only procedure which can permanently remove spasticity (stiffness) caused by Cerebral Palsy. It corrects muscle spasticity by cutting the nerve rootlets in the spinal cord that are sending abnormal signals to the muscles whilst leaving the healthy nerves intact.
Aria will also need an additional surgical procedure for muscle/tendon lengthening (PERCs) to relieve and stretch the Achilles tendon. Although SDR relieves spasticity, the contractures that remain require lengthening.
Given the severity of the SDR surgery, Aria will need to remain in the US for approximately 4 weeks post op to recover. But once she does, the stiffness and pain in her ankles will be relieved and she will be on her way to living a normal life. This will mean Aria will be able to walk and run pain free.
The sum stated above will help in covering:
• SDR surgery (including pre-op and post -operative care)
• Braces and equipment
• 4 week hospital stay
Aria is a determined, intelligent and stubborn little girl who loves the company of people. She loves tea parties, painting and singing to Disney songs at the top of her lungs. This surgery will give her the chance to keep up with her friends and get around independently in the way that a little girl should.
Aria is the daughter of Alex and Katerina Charalambous whose paternal and maternal grandparents are from Limassol and Nicosia, Larnaca respectively.
Please help us give Aria the chance to lead the happy and pain free life that she deserves.
Any way you can support and share is much appreciated by us both.
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