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Vanessa's Story
Living her Life with Dravet Syndrome

 

Vanessa, a beautiful 23 year old girl who lives in Melbourne, Australia with her mum and dad, Maggie and John.
Vanessa has Dravet Syndrome and was only diagnosed with at 12 years of age. Before this we were told she had a severe seizure disorder(Epilepsy) but no name for it. Vanessa had her first seizure on April 12th,1994 at four months of age, twelve hours after her four month Triple Antigen immunization, which brought on a fever, which caused her to have a seizure. This seizure lasted twenty five minutes. We were told by the hospital it was just a febrile convulsion due to her having a high fever. Then at nine months of age she had another seizure and from then on she was having many seizures constantly. Vanessa has been in intensive care unit three times at The Royal Childrens Hospital between the ages of one and three years old with prolonged seizures lasting up to forty five minutes.
Vanessa has had and still continues to have many seizures. She has tonic clonic( grand mal) seizures every 7-10 days. Most of these seizures are currently happening  at any time of the day, making her drop to the floor and causing injuries, some serious. She also has myoclonic jerks and absence seizures daily.
Vanessa completed her schooling at Special school in 2011. She now attends Scope DIsability Services and Lifestyle Options for young adults, she attends here four days a week.
Vanessa tries to be like any other 23 year old young lady, but her symptons of Dravet syndrome, seizures and medications prevent Vanessa from being independent and doing what most 23 year olds do. However, Vanessa enjoys listenening to music, she loves Barney,she loves to dance and sing along. She also loves to watch dvd’s, she loves One Direction and Justin Bieber, she loves their music. She also loves to go to concerts and watch musical shows which she cannot do independently, she also loves animals, going out for coffee with her friends and Carers at Scope. Vanessa is a very sweet, very friendly girl, very much a social butterfly. Although Vanessa enjoys playing outdoors, she has to be careful not to get overtired or too hot, because this will trigger her seizures.
As a consequence of her condition, Vanessa has Gait problems and has trouble with walking. Vanessa is unable to walk long distances, she complains of sore legs and gets tired very easily.  She currently has to wear orthotics in her shoes, which help a little bit with helping to keep her legs and posture straight. Many teenagers/young adults with Dravet Syndrome can develop gait problems, stoop at the knees and can also develop scoliosis. Vanessa now uses a wheelchair  when out shopping with her Carers or family.
Vanessa has tried many medications to control her seizures, but no control of her seizures has surfaced as yet. Her seizures are brief now, lasting under two minutes, but still happening. There are many side effects from these medications which add to the symptons of her Dravet Syndrome. She has behavioural and cognitive problems. She has difficulty with attention and concentration. She is unsteady on her feet and always feeling tired. She just copes with getting through a day at Scope. Vanessa comes home from her day services each day, takes off her shoes and lays down and has a nap.
Breakthrough in Genetic Research of Epilepsy  have  found a particular gene that causes the different types of seizures. Vanessa has been part of this genetic research. The particular gene is called SCN1A, which Vanessa has, and most children with Dravet Syndrome have. The gene arises during early development of the embryo. Both of us (Vanessa's parents) have also had this gene testing done and neither of us carry this gene.
Further research is currently been done to help with finding new medication , and hopefully finding a cure for Dravet Syndrome.
Life has to go on in our family.  Life is different to that of an average family. There is always more to worry about, more stress and life is never simple. I know that Vanessa's every day life is a struggle most days. Vanessa is a very strong, brave, friendly young girl, who stays positive and tries to do the best that she can.
We feel that there is not enough information out there and not a lot is known about Dravet Syndrome. We do get some support from various organizations in Australia. Maggie and John both continue to create as much awareness as they  can, they have created this website telling of Vanessa's story, and more information about Dravet Syndrome. Maggie and John  offer help and support to many other families that contact them , who also have children with Dravet Syndrome. These families are from Australia and overseas.
So, this our story  about our beautiful girl, Vanessa, who lives with a severe seizure disorder known as Dravet Syndrome. We want to tell our story of how difficult it really is bringing up a child with this disorder, and let everyone out there be more aware of this medical condition and what life with Dravet Syndrome is really like.

 

 

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Last Update 11 February, 2017 12:00