Dravet Syndrome Stories From Those Who Know

vanessaVanessa's Story

Vanessa, born 10th December, 1993, lives with her parents, John and Maggie in Melbourne , Australia . Vanessa was just four months old when she had her first seizure, twelve hours after her Triple antigen immunization. This seizure lasted thirty five minutes. We rushed her to hospital not knowing what was happening to her. We were told by the hospital it was just a febrile convulsion due to her having a fever and were sent home.

At nine months she had another seizure and from then on she was having prolonged seizures constantly. Vanessa has been in intensive care unit many times. She went through the worst time between the ages of 9 months and four years of age. Vanessa still continues to have many seizures. She has tonic clonic seizures every two weeks mainly night while sleeping, but she can also have these seizures if she gets over exhausted or too hot. Vanessa also has myoclonic jerks and absence seizures daily. Medications Vanessa is currently on are Epilim (Sodium Valproate) 800mg twice day, Topamax 200mg twice day and Clonazepam 50mcg twice day. Vanessa has tried many medications to help control her seizures, but has never had any real good control. The longest Vanessa has been seizure free is ten weeks. Her seizures are under one minute now, but still happening.

Vanessa has behavioural and cognitive problems, difficulty with attention and concentration. She is fourteen years old but her intellect is that of a 7-8 year old. Vanessa has Gait problems and wears orthotics in her shoes to help to keep her posture straight. Her walking has got worse after the age of 12years old. She stoops at the knees and can't stand up straight. She gets very tired easily.

Despite Vanessa having Dravet Syndrome, she is in many ways just like most fourteen year old girls. She loves listening to music and dancing (in her own special way), she is a friendly and bubby girl, and loves to chat with people.

Vanessa's journey through life so far has been difficult but she is strong and brave and gets through each day trying to do the best that she can. Been a parent of a child with Dravet Syndrome I would like to create as much awareness as I can on this syndrome. I feel that we all need to support each other and never give up hope.

4th December 2008 Submitted by Maggie. You can read more about Vanessa by contacting Maggie & John dravetbutterfly93@dravetsyndrome.com or visiting their site at: www.dravetsyndrome.com

 

Recommended Links

Our Dravet Butterfly, Vanessa: Offering a parent perspective on raising a child with Dravet Syndrome. See Vanessa's story, information and links on Dravet Syndrome and their photo gallery.