| Narelle Kerr |
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Lily has skin markings (incl. the beginnings of facial angiofibromas), brain involvement, epilepsy (controlled at this stage after undergoing Neurosurgery 4 years ago), visual impairment (left hemianopia) and developmental delay. Lily started school in 2009 and attends a local mainstream primary school 1 day a week, and a Specialist School the other 4 days. Lily is a delightful, little chatterbox who loves life! She adores her 2 little sisters and her extended family and is thoroughly enjoying school life so far. After such a bleak, uncertain TSC diagnosis, Lily has astounded us with her development and surpassed all our expectations. We are very proud of her and celebrate each and every one of her achievements, often with a tear in our eye. My work background pre-children was secretarial/administration. I am now a full-time “stay at home” Mum (whose NEVER home) and I dabble in a little bit of bookwork/accounts in my spare time! I first became involved with the ATSS in 2004 and have been in regular contact with the Committee since Lily’s diagnosis. I attended my first Conference weekend/AGM in August, 2006 and joined the ATSS Committee because I would like to be able to give something back to Sue and her fabulous, hard-working Committee who have been my "guardian angels" since Lily was diagnosed! I am also interested in learning as much as possible about TSC and believe that this is the perfect way to expand my knowledge while meeting some fantastic people/families along the way. In my lifetime, I would like to raise community awareness of TSC. |