Lily (2014)

Written by Narelle, Lily’s mum (VIC, October 2014)


Lily was diagnosed with TSC at 13 months of age after having 4 tonic clonic seizures while we were holidaying in Sydney! We presented at Emergency at the Sydney Children’s Hospital, Randwick. at 4:00 pm thinking, or rather hoping, that our baby girl was having convulsions. Mother’s intuition told me it wasn’t this because Lily didn’t seem to have a temperature, but I didn’t really want to deal with the alternative. Our perfect little girl couldn’t possibly be an epileptic!

By 9:00 pm chest x-rays and skin checks had been carried out and they were prepping Lily for her first anaesthetic. This would be the first of many to follow. They whisked her away for a CT scan where our worst fears were confirmed. And so began our journey on the roller coaster of life with TSC.

The Royal Children’s Hospital, Melbourne became our second home for the next 14 months.

The first 6 months passed by in a blur of appointments: neurologists, ophthalmologists, renal ultrasounds, echocardiograms, MRIs, EEGs, and genetic counselling. In amongst the appointments, Lily started having complex partial seizures, which started off very subtle, but within a few months were becoming a regular part of her day and were proving a challenge to control with medication. After trial and error with a mixture of 4 or 5 different anti-epileptic drugs, It was suggested that Lily might be a candidate for neurosurgery.

We had mixed feelings but decided to go ahead with all pre-surgery testing so we could make an informed decision. So began the tirade of video EEG, scans and MRIs. We met in early May 2005 to walk through all the results. Lily was a candidate! They had pinpointed all her seizure activity to one large tuber on her right occipital lobe. Odds were borderline though; 50-60% chance of successfully stopping seizures, 95% chance of losing her left-hand field of vision in both eyes, a condition called left hemianopia.

The final step in the process was to meet with Lily’s surgeon. There was only one question I wanted to ask her, ‘What would you do if this was your child?’ Without hesitation she answered, ‘I would go ahead with the surgery. No question.’

Lily’s Neurosurgery was booked in.

Lily was under anaesthetic for more than 7 hrs, the longest 7 hrs of my life! She breezed through it and there were no complications. One week post-surgery, Lily said her first word. And she hasn’t turned back since. And remember those odds? A 50-60% chance of stopping the seizures. Well, our Lily was one of the lucky ones. We are now approaching 7 years post-surgery and Lily is still seizure free and she has also now been almost 5 years Epilepsy medication free.

To paint a picture for you, Lily is infectious! She has many white skin lesions, forehead plaques and facial angiofibromas. She has multiple tubers in her brain, some very small lesions on her kidney, both of which are monitored annually, and one small tuber on her heart which is not causing her any problems. She has a small lesion on her left eye and also suffers from left hemianopia as a result of her surgery but this hardly affects her functionality at all.

Lily is developmentally delayed but she has also reached milestones that we initially thought might be impossible. She had regular speech and occupational therapy and attended an early intervention playgroup as a toddler. She is now in Grade 3 and attends a special school four days a week and a local mainstream school one day a week. Lily loves school. She is reading and writing and has proven time and time again that she has the ability to learn; it just takes her a little longer to get there. She has autistic tendencies, some of which are humourous and quirky and some of which are downright challenging but she is the most affectionate, determined, happy little girl you will ever come across.

Lily and her sisters

The great loves of Lily’s life are music, swimming and family; particularly her three younger sisters, Hope, Poppy and Sasha. She also enjoys dancing, the great outdoors, books, Barbie dolls, socialising and life in general!

I sometimes reflect on just how far this amazing little person has come since her initial diagnosis. She has taken me on an unimaginable journey. The highs are exhilarating, the lows are gut-wrenching but with every bump and crossroad, comes an even deeper, unconditional love and admiration for her. Lily has surpassed all my expectations and has taught me more about life than any other person I know. Lily is my inspiration!

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