At fifteen months old, Ellie Margaret Topliff has changed the lives of many. Diagnosed with Tay-Sachs disease just after her first birthday, her heart-breakingly gorgeous smile touches all who meet her.
Ellie’s parents, Catherine and Joel are beyond in love with their little girl that they had waited so long for. Ellie developed normally until her parents noticed that she stopped reaching her milestones and even started to lose the abilities she had previously learnt. She was otherwise happy, healthy, and was always smiling. Still, they felt something wasn't right and an appointment was made with a paediatrician. Upon seeing Ellie, the paediatrician admitted her to Nambour Hospital immediately and from there she was transferred to Royal Brisbane Children's hospital for testing. After days in hospital Ellie was sent home to await results. She was able to celebrate her 1st Birthday at home with loved ones but 6 days after her 1st Birthday they were called back to Royal Brisbane and given the devastating and heartbreaking result. Ellie had Tay-Sachs Disease.
Tay-Sachs disease is a very rare, inherited disease caused by an abnormal gene. People with this abnormal gene do not have an important enzyme that helps to break down a fatty material called ganglioside GM2. This material builds up in the brain, and eventually damages nerve cells and causes neurological problems. In its advanced stages, the disease causes a gradual loss of vision, deafness, seizures, respiratory problems, gradual paralysis and dementia. The life expectancy of a child with Tay-Sachs Disease is anywhere between 2 to 5 years of age. There is no cure nor is there any treatment available.
The main focus for Ellie’s parents is to keep Ellie as comfortable and happy as possible and to make the most out of every moment they have with Ellie, to create everlasting memories and to enjoy her beautiful, infectious smile.
To help this amazingly resilient family, Tewantin Noosa RSL are holding a fundraising trivia night on Sunday 25th May at 8pm. Entry is $10 and there will be lots of giveaways, raffles and fun. All proceeds go towards Ellie’s ongoing care. http://www.gofundme.com/Elliessmile
Trivia Night for Ellie’s Smile
Sunday 25th May at 8pm
Tewantin Noosa RSL
Tewantin Noosa RSL, Tewantin
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