Lily (2024)

Written by Narelle, Lily’s mum (VIC, May 2024)

Lily’s story was first published by TSA in 2014 when Lily was 8 years old. In this story, Lily’s mum Narelle has kindly given us an update on their TSC journey. Lily has just celebrated her 21st birthday.

Our daughter Lily was diagnosed with TSC (Tuberous Sclerosis Complex) in 2004 at 13 months of age, after suffering a series of tonic-clonic epileptic seizures. It was a condition we had never heard of before our daughter’s diagnosis; and rather frightening for a young couple who shared aspirations of having a large family.

After the initial shock and influx of appointments to commence the treatment and monitoring of Lily’s TSC, my husband and I exhausted all options available to determine whether we had any physical symptoms of the condition ourselves. Genetic testing in TSC is very complex, expensive and until recently, was not even available in Australia so this was not an option for us in 2004. We underwent skin checks, brain MRIs, kidney and heart CT scans and went through a very detailed round of genetic counselling. We were given 95% clearance that neither of us had TSC and we made the decision to go ahead and try a second pregnancy. Our daughter Hope was born in October 2005 and daughters three and four (Poppy and Sasha) followed in 2008 and 2010.

Lily has attended regular appointments at the Royal Children’s Hospital and Royal Melbourne Hospital in Melbourne, to monitor her condition and has maintained good health for the majority of her 21 years. Lily has many physical symptoms of TSC- white skin patches all over her body, forehead plaques and facial angiofibromas across her cheeks, nose and chin (which have all but disappeared since the introduction of everolimus in 2018). She suffered with epilepsy in the early years which has been controlled since 2005, after neurosurgery to resect one large tuber was successful in stopping her seizures. She has multiple tubers in her brain, AMLs on her kidneys which have seen limited growth since the introduction of the everolimus, a small tuber on her heart and two lesions on her right eye. She also suffers from left hemianopia as a result of her neurosurgery and is unable to attain her driver’s licence because of this impairment. Her main challenges in life are the result of her intellectual impairment and Autism Spectrum Disorder (ASD).

Lily attended a local special school which provided her with a more intimate and specialised way of teaching and focused on improving her life skills. She was a very proud School Captain and graduated in 2021.

Since leaving school, Lily has been a valued employee at a local café, The Little Acorn. She graduated school with the goal of completing a barista course and achieved this early in 2022. She enjoys making coffees, waiting tables, doing dishes and also loves the social side of her role, chatting with the customers and helping with the preparation of the café food in the commercial kitchen.

Aside from work, Lily spends one day a week with a support worker for some one-on-one therapy, working on her independence and daily living skills. Her goal is to one day move into a place of her own and live independently.

Lily also enjoys one day a week working on our family farm. She loves to help her dad put the hay silage out and has taught herself to drive both the tractor and the quad bike. She is a fantastic helper.

Lily loves people and has an amazing ability to interact with people of all ages and genres. She has maintained many friendships from her school years. She loves to talk and stays in touch with friends and family via text and also enjoys daily ‘facetime’ calls with many of her friends. Once a month, she gets together with a group of friends from school and they meet at a local hotel for dinner, which is always a highlight of her month.

Lily has always loved music and has been a member of the ‘Find Your Voice’ choir for the past 6 years. The choir recently attended the famous Port Fairy Folk Festival, where they perform annually (check them out on Facebook or You Tube and you’ll see Lily, front and centre, loving life!)

Lily lives at home with us and her 3 sisters; Hope (now 18years), Poppy (now 15) and Sasha (now 13); all live without TSC and are wonderful companions and a tremendous support for her (and us) on our life’s journey. We are also blessed to have the love and support of a large extended family and some very special friends. These people have all helped shape the person Lily is today and we are very grateful for their unconditional love and support. Coffee dates, shopping trips and sleepovers are a regular occurrence in Lily’s life and we never take for granted how lucky we are to have this ‘village’ around her.

We have been riding the TSC wave for 20 years now. We’ve been dumped a few times, but we’ve paddled out and tried again and again and managed to carve out a few barrels, hang 10 and it’s actually been pretty gnarly. Lily is the sunshine in our days and she makes surfing this wave so worthwhile.