A FUNDRAISING drive for an 11-year-old girl with a condition causing uncontrollable epilepsy and a severe intellectual disability will be held in Duncraig on Saturday.
After suffering infantile seizures at 16 weeks, Sienna Jukes was diagnosed with Polymicrogyria, a developmental malformation of the brain which sees an excessive number of small folds on its surface.
Mother Sonia said her “placid, beautiful” daughter had a severe form of the condition and has to take seven different epileptic medications, totalling 20 pills a day.
Sienna is on a specialised diet, monitored by Princess Margaret Hospital dieticians, and takes many vitamins.
“Sienna has never been seizure free and continues to have multiple seizures on a daily basis,” Mrs Jukes said.
“Over the years, the constant daily seizures have affected many parts of her life and in addition to this she has developed a 45 per cent curve in her spine causing scoliosis.
“She is a tall child and now is unable to walk independently and spends the majority of her time in a wheelchair.”
Turning 12 next month, Sienna loves swimming in her school’s hydrotherapy pool, music, spending time with her family and being outside.
Mrs Jukes, who lost her husband in 2011, struggles to lift her growing daughter who now weighs about 40kg.
“The current family car is no longer suitable as her wheelchair has to be pulled apart in four pieces every time it is put in and taken out of the vehicle,” she said.
The Duncraig Lions Club launched Project Sienna earlier this year to raise funds to modify a suitable car for the family, including a ramp, so it was easier to transport Sienna.
Mrs Jukes said the Duncraig Lions Club along with the Australian Lions Foundation (ALF) had worked tirelessly to cover the cost of the conversion.
“As a widow raising three children, the cost of a new car with a ramp was to be a financial challenge for which the Lions Club has made the financial strain much less strenuous,” she said.
Club member Rob Wright said Mrs Jukes had been quoted $22,000 for the modifications to a Kia Carnival and the ALF had agreed to cover half.
Mr Wright said any extra funds raised by the club would help with the cost of the new car and they had called on other clubs for donations and started an online fundraising page for the project.
They will hold a day for Sienna at Poynter Farmers’ Market on Saturday, with a plant sale and Russian raffle. Prizes include a Michael Hussey signed cricket bat, a signed photo of West Coast Eagle Matt Priddis, an El Cabello Resort package, a whale watch tour, family passes to AQWA and Caversham Wildlife Park, vouchers and more. It runs 9am to noon at Poynter Primary School, 39 Poynter Drive in Duncraig. Visit poynterfarmersmarket.com.au or to donate to Sienna online, visit gofundme.com/uvb392tg.