Unlike many of our clients, 15-year old Megan has no financial settlement awarded as a result of her illness. Her life transformed after a routine eye appointment highlighted a devastating tumour that led to a series of life-changing events for Megan and her family. Megan’s rehabilitation is a long but rewarding process, achieving those small steps forward that every parent of a disabled child cherishes. The Frenkel Topping Charitable Foundation match funded a rowing machine to help Megan on her journey ad she has kindly shared her story with us.
Megan (15) owes her life to a routine eye appointment at Specsavers Opticians, Wellingborough. In September 2011 she was found to have pressure behind one of her eyes. Unfortunately the GP was not as concerned and it was a further five weeks before Megan was seen for a routine ophthalmology appointment at Kettering General hospital. By noon, it was clear that the pressure build up, now behind both eyes, was being caused by a tumour the size of a tennis ball.
Less than 24 hours later, Megan endured an eight-hour operation at The Children’s Hospital at John Radcliffe Hospitals NHS Trust to remove as much of the tumour as possible. Neurosurgeon, Mr Jay Jayamohan operated on Megan; the pressure in her head was so severe that the doctors believed that she would have been dead by the end of the week without immediate surgery.
Unfortunately, the tumour, a thankfully benign posterior fossa astrocytoma, originated in her cerebellum and this caused unforeseen complications. Imagine the cerebellum is the circuit board that controls you – the surgery resulted in all her fuses being blown. This left her ‘locked in’ which means that when the anaesthesia wore off she didn’t wake up, she didn’t move, she didn’t speak, she had no reflexes and she couldn’t breathe. But she wasn’t unconscious – she could hear and respond with tiny movements in her toes. Locked into her head at 11 and the doctors did not have high hopes. Her mum and family sat by her bed, day in day out, willing her to wake up!
Megan endured two further surgeries to assist her breathing and the drainage of fluids from her brain before finally cracking her right eye partially open three weeks after surgery. It was another six weeks before her eyes were fully open although this celebration was marred when it became clear she now suffered from double vision. From there she started to regain control of her body starting with her little toes and fingers. Her movement slowly reached her trunk and her reflexes kicked back in.
Megan’s progress was halted in late November with a bout of pneumonia which is where her mum discovered her temperature control was ‘out of whack’ with no sweating until her temperature was above 38 degrees!
Her physical recovering slowly progressed very much like a baby progresses – her first step was learning to control her neck and hold her head up before moving on to rolling her body, to holding items in her hand. Megan and her family worked out hand signals to help her communicate her needs especially the all-important ‘I’m about to throw up’ sign! She started ‘eating’ just before Christmas and spoke her first word at New Year. Unfortunately, she suffered another setback when she contracted bacterial meningitis and had to have a lumbar drain fitted. However, her natural determination showed through as she fought back and continued to relearn to eat, speak and move!
In March 2012, Megan was transferred to a specialist rehabilitation centre where she spent seven months receiving intensive physiotherapy to help her progress from sitting to crawling. Megan and her mum were finally able to return home in November 2012 over a year after they left the house. Megan now attends a specialist school and her home has been adapted to meet her needs.
Megan desperately wants to walk but unfortunately the local NHS services are poor and Megan doesn’t get the support she needs to meet this goal. Megan’s Mum tells us she was able to access an ‘amazing’ private physio team from Physiofunction (specialist Neuro physios). Kirsten, her physiotherapist, has helped Megan to make massive improvements towards her goal. She can now ‘walk’ with the aid of an, as she calls it, old person’s walker as long as someone follows behind her. The physio is expensive but worth every penny. Megan has been fortunate to receive some charitable donations towards her therapy.
Megan has faced many challenges since acquiring her brain injury not least coming to terms with being a regular kid just starting Year 7 to ‘waking up’ unable to do anything for herself. This understandably leads to anger and frustration. Megan’s injury makes it difficult for her to negotiate or compromise on things that she wants. It also means that sometimes in desperation and frustration she shouts and gets angry. Looking in from the outside you wouldn’t really know there was anything wrong which makes it even harder when people are staring at her when she is having a ‘blip’.
From the moment Megan was in hospital she received lots of support from family and friends as well as from a very special charity, the child brain injury trust. Caroline Molloy, a trust representative, visited Megan and her mum as often as she could in hospital and rehabilitation. Her help has been invaluable as it was Caroline that put Megan’s mum in contact with Physiofunction as well as more recently attending school SEN reviews.
Caroline also helped Megan receive funding for a rowing machine, part of these funding came from the Frenkel Topping Charitable Foundation. The rowing machine means that Megan can exercise and build up her strength daily instead of only once a week at physio sessions. It allows her to be in control of her own exercise regime and a rowing machine means that Megan gets all over benefits, strengthening her muscles and helping with her core strength.
The rowing machine means that Megan can get fitter and stronger quicker and hopefully achieve her dream of walking independently again.
For more information on how to apply for a grant from the Frenkel Topping Charitable Foundation, please click here.