About Vanessa

Vanessa is a beautiful fourteen year old young girl who lives with her parents, John and Maggie, in the western suburbs of Melbourne, Australia. Vanessa has Dravet Syndrome, and was only diagnosed with this syndrome three years ago, but she has been suffering from many types of seizures since she was four months of age.

Vanessa had her first seizure twelve hours after her four month Triple Antigen immunization, which brought on a high fever, which caused her to have a seizure. This seizure lasted twentyfive minutes. We rushed her to hospital, not knowing what was happening to her. The hospital told us it was just a febrile convulsion due to her having a high fever, and then sent us home.
Then at nine months of age she had another seizure, and from then on she was having prolonged seizures constantly. We were in and out of hospital all the time.

Vanessa has been in intensive care unit three times at The Royal Childrens Hospital, Melbourne. She went through a very bad time between the ages of nine months and three years of age. She would have prolonged seizures that lasted upto fifty minutes. She has also been put into drug induced comas to stop her body from having seizures. It was a very difficult time .

Vanessa has had, and still continues to have many seizures. She has tonic clonic(grand mal) seizures every three weeks. These seizures are currently happening at night while sleeping, usually after about hour of falling asleep or sometimes  are happening in the early morning, just before waking. She can also have these tonic clonic seizures during the day if she gets over exhausted or too hot. Vanessa also has myoclonic jerks and absence seizures daily. She has also developed the complex partial seizures over the last year.

Medications that Vanessa is currently on are Epilim, Topiramate and Clonazepam. Vanessa has tried many medications to help control her seizures, but there hasnt been any real  good control of her seizures upto now. The longest Vanessa has been seizure free is only ten weeks. Her seizures are now lasting under two minutes, but are still happening.
There are many side effects from these medications which add to the symptons of her Dravet Syndrome.
Vanessa has behavioural and cognitive problems. She has difficulty with attention and concentration. She can walk, but is very unsteady on her feet and gets tired very easily. She is unable to walk for a long distance. She just copes with getting through a day at school. Vanessa has to lie down and have a nap every day after school.

Vanessa goes to a Special school not far from home. She enjoys school very much. She is just like most fourteen year old girls. She enjoys listening to music,she loves to dance and sing along. She also loves watching dvd's of Hi-5, The Wiggles and the Doodlebops (a Canadian group) she loves to watch Playhouse Disney. She also enjoys playing Basketball and enjoys playing with a ball. She loves to play games on the computer, and she loves animals as well.
Vanessa is a very sweet , friendly girl, very much a social butterfly. Although Vanessa enjoys playing outdoors, she has to be careful not to get too hot or over exhausted because this will trigger her seizures.

Seizure triggers that we must avoid are, fevers, illness, vaccinations, temperature change, hyperthermia, flashing lights, some visual patterns, stress and excitement.

As a consequence of her condition, Vanessa has gait problems and has trouble with walking. She wears orthotics in her shoes, which help a little bit in keeping her legs and posture straight. As children with Dravet Syndrome get older their movement gets more clumsy. A child with Dravet has tight calves and is unable to straighten their knees and feet and ankles turn out, some can also develop scoliosis. The children need to be kept active (but not to overdo it)and constantly require Physiotherapy and Occupational Therapy, which can be very expensive . Vanessa gets this therapy through her school, but only a few sessions a term, which is just not enough. I also do alot of exercise and stretching activities with her at home, whenever I can.

Life has to go on in our family. There is always more to worry about, more stress and our life is never simple. I know that Vanessa's everyday life is a struggle most days. Vanessa is a very strong, brave young girl who stays positive and tries to do the best that she can.

So, this is the story of our child, who lives with Dravet Syndrome everyday. We never give up hope, and do as much as we can with Vanessa. We make the most of each day.

We know how stressful life is and the overwhelming emotional strain of living with the daily threat of seizures and or sudden death. There needs to be more support in helping these families to cope with this seizure disorder.  I hope that in sharing our story, we can create more awareness of Dravet Syndrome, we need to support each other, be involved in the ongoing research, and hope that one day a cure will be found for this catastrophic syndrome.

IDEA-LEAGUE

The International Dravet Syndrome Epilepsy Action League (Idea-League) is an international organisation which has helped me tremendously with support , advice and bringing me together with many other families around the world. In August, 2008, we were lucky enough to attend the Improving the Outcome Dravet Syndrome Conference in Chicago. It has been  the best thing for us, attending this conference and meeting many professionals, and Physicians from around the world, and other families with children who have Dravet Syndrome just like our daughter, Vanessa. Vanessa was also very fortunate to have a medical consultation with Dr Dravet while at the conference.

 I am a member of the Idea League, which is an online international group of parents and professionals , I spend many hours on the internet on this chat forum trying to find answers and keep up with the latest research and information on Dravet Syndrome.

 Other organisations I get support and advice from are The Epilepsy Foundation of Victoria, the Neuroscience Centre of The Royal Childrens Hospital, Melbourne and the Epilepsy Research Centre at The Austin Hospital, Melbourne.(see  Links for information)

Modifications & Design managed by Merlino Nominees Pty Ltd

This site is © Copyright www.dravetsyndrome.com All Rights Reserved

Last Update 28 May, 2010 21:20