Tara was born in 2005. She seemed like the perfect baby who never cried until she was rushed to hospital at just 6 weeks old with what seemed like an ordinary case of bronchiolitis. During that evening she suffered a seizure that lasted for over 90 minutes and she has never had a seizure-free day since.
Tara’s underlying condition remained a mystery until she was diagnosed with Dysphagia and Floppy Baby Syndrome in 2006 and with Autism in 2007. In 2009 Tara was also diagnosed with Dravet Syndrome – one of the most catastrophic forms of epilepsy. This is a very rare condition effecting only a few hundred children in Australia, and probably less that 1000 worldwide. It is life threatening and there is a high chance that one day a seizure will take Tara from her family. In order to do everything possible to prevent this from happening Tara has a seizure response assistance dog to be beside her particularly at night.
On an average day Tara has over 100 minor seizures and around 5 to 10 seizures that render her unconscious.
We first met Tara earlier in 2011 she was five and a half years old and still not fully toilet trained as, although she knew how to use the toilet, every major seizure resulted in an accident, meaning that the amount of nappies needed on a daily basis was similar to a new born baby. Tara was on a costly, special thickened fluids diet and regular medication. The costs associated with these day to day expenses added to the special equipment that she needs to support her and keep her safe during seizures have put a big strain on the family budget.
Tara’s mum is her full-time carer and her dad helps during the day after working night-shift as a baker in the country town in which they live.
Due to the severity of Tara’s seizures she often ends up unable to walk, on a good day she can walk but a bad day she cannot even support her head.
In February 2011 we were able to support the family by contributing $2,000 (via Tara’s Car Appeal) towards a full transmission rebuild on the family’s wheelchair modified Tarago which had stopped working in reverse. Without the van, Tara couldn’t access her Physiotherapy, Occupational Therapy and other medical appointments.
Tara’s Appeal raised a little extra than required and we were able to put that to good use in July 2011 by buying Tara a much needed new bed that could fit her mum in it too for those nights that Tara needed someone to sleep with her.
By August 2011 Tara had sadly deteriorated and needed additional supports. She now needed a walking frame and a special seat that would give her support through her seizures, and the rest period after each seizure, as well as for use during feeding as she was losing the ability to feed herself.
These special seats, called Gravity Chairs, are $1,895 each. Tara could access $1,200 of funding towards the chair via her Helping Children with Autism package and we launched an appeal to cover the remaining $695 – and this wonderful community raised that in just 7 days!
Read about the family celebrating Tara being back on the road! Bendigo Advertiser article