Dravet Syndrome Stories From Those Who Know

Dannielle's Story

by Dannielle Goodwin

Danielle Goodwin and Family
Photo #1 (Left to Right): Eric, Daniel, Jane, Dannielle, Sophie
Photo #2 (Top to Bottom): Daniel, Dannielle, Sophie and Eric
Danielle and Family
My name is Dannielle, I am 27 years old I live in Australia and I am living with Dravet syndrome and would like to give you a positive outcome of Dravet syndrome because I feel that a lot of parents see doom and gloom with dravet syndrome and not the positive potential side of it. Yes I am living with dravet syndrome. I found out I had the SCN1A gene when I was 19 years old just after I finished a modified year 12 at high school. I am married and have two children of my own that I naturally conceived with faith in Jesus Christ our Lord, both of my children are negative to SCN1A gene I live a normal life my husband works full time and I am a stay home mother I do everything from cooking cleaning getting my children ready for the day ect... I don't have a carer because I get warning when I am going to seizure I haven't had a seizure for 18 months now and the longest I have gone is 3 years yes 3 years. I am a identical twin and my older twin sister does not carry the SCN1A gene and found out by my neurologist that we are the only identical twins in the world for one to carry the gene and the other not, I have been told also that I am the best at my condition and that is why I would like to give other family's hope. I have kept the dravet syndrome thing to myself for 8 years now and after having my miracle children I just want to show others what Jesus can do for them to. I recently was a guest speaker for the dravet syndrome conference in march in Melbourne where I talked in front of parents from Australia and New Zealand Wide for the first time where I was able to answer parents questions on how their child feels ect... This is an article on myself and my twin sister it was on the world news on the day a gave birth to my son. I would like to give this story to you that I had writen myself to read in front of my state Premier of Victoria Australia for the brain reaserch centre in Melbourne Victoria Australia but I am not required to speak any more because the state Premier is on to much of a tight schedual so I hope this stroy brings you peace and hope within you.

Yours sincerely

Dannielle Goodwin

 

Since this story was published Dannielle has gone on to have three children, Jane her youngest daughter has been discovered to have the SCN1A gene mutaiton and has more recently started having seizures. You can read Dannielle's full story by clicking on the link below.

Download Dannielle's Purple Day Story published in the Latrobe Valley Express (pdf file format)
Used with permission, Latrobe Valley Express www.lvexpress.com.au and originally published on 23rd March 2015.

Dannielle is currently doing some fundraising for Dravet Syndrome Research, if you would like to contribute please go to the Purple Day - Epilepsy Awareness - 26 March 2015 Fundraising Site for more information.

Dannielle Recommends Visiting

New England Journal of Medicine Article about Dannielle - Timing of De Novo Mutagenesis - A Twin Study of Sodium-Channel Mutations (Dannielle was a participant in this study)

 

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