16:22 14-01-2009

anita

Love this webite. My 6 yr old granddaughter has just dx'd with dravet's. This is a struggle for all of us! we set up a site for Brianna at www.nowaydravet.com

01:46 17-09-2008

Felicia Harris

Hi my name is Felicia Harris and my daughter, Alexandria Harris, was just diagnosed with Dravet's Syndrom also know as severe myoclonic epilepsy in infancy. This is a very rare diagnoses for epilepsy. Unfortinatily there is not cure and she will have this for life. She is only 8 months old and she has been lifeflighted 2 times and always in the emergency room for her seizures. She has them all the time. She was just recentinitly in ICU for a bad seizure that lasted 2 hours and medication could not stop it. All the medication had put her in a small coma. She had her first seizure at 3 months on April 28th 20008 and from then on they have only gotten worse. I am so scared for her future and i pray things will get better. I want to thank you so much for this web site i have found alot of helpful information on here. Thank you so much and God bless you.

02:49 06-08-2008

Shazza

Hey Marcel

I was just having another look around. You've done such a great job with this site and it's great to see how the site has grown in size and versatility over the years. I'm sure Jake is getting really big now, as is Jarod who turned 10 this past week. Where does the time go? For the benefit of visitors who don't know us, Jarod has Dravet's Syndrome and is positive for the scn1a mutation. We have had nearly 1 year seizure free, which is very exciting. (knocking on wood that it lasts).
I also noticed you've got an old address for Shazza's, you might want to update it. We've moved to http://shazzas.info . I hope that you are all doing well, especially Jake. Keep up the great work Marcel, you can see the site gives you much joy as does Shazza's for me.
All the best, your mate from Oz, Shazza

22:37 30-06-2008

Leida van Riel

Hallo
Wat een mooie site ,heb het met veel interesse bekeken
wij hebben vorig jaar ook te horen gekregen dat onze dochter Michelle nu 13 jaar dravet heeft, dus je gaat zoeken naar informatie
mocht er nog eens een keer een dravetdag ergens zijn zou ik dit graag willen horen

Vr groet Leida van Riel

11:40 01-06-2008

colin earnshaw

My daughter Georgia has recently had the scn1a gene test and was found to have a mutation of that gene,despite asking our consultant repeatedly of the potential out come we are still none the wiser.I have trawled through the various websites to gain as much information on dravet syndrome but would like to talk to parents with the condition.Georgia had her first episode 5 hours after having her 3 month injections and since then has been on SODIAM VALPORATE,PIRADOXINE,CARBOMAZAPINE,LAMOTRAGINE,TOPIRAMAX and now they want to try an unlicensed in the uk drug called STIRAPENTOL. Please contact me on [email protected] if you can be of any help ,thanks.

15:58 14-04-2008

Casey Durnan

My little 1 year old great nephew has just been diagnosed with Dravets.
Thank you for your web site. You have made it very easy to understand this complicated and unusual syndrome. My thoughts and prayers are with every parent and child involved with Dravets.

08:05 07-04-2008

Brittany Chambers

My 2 1/2 year old daughter has dravet syndrome and as of now has no symptons other than epilepsy. I would like to know more about whats to come and what to prepare for. I want to know if there is any hope of her having a normal life.

17:55 10-01-2008

HopeForSydney.com

http://www.HopeForSydney.com

17:53 10-01-2008

HopeForSydney

Lovely web site! Sydney is 6 with Dravet syndrome, you can see her story at

11:54 13-12-2007

David Taylor (UK)

Tracy and I are parents of Olivia (Lulu) who has suffered SMEI since aged 7 months. She was born July 2002 and started, out-of-the-blue, on Feb. 7th 2003.

She has had tegratol, lamicatol, topiramate and epilim. She is currently having epilim reduced and Topiramate increased. (I've quoted brand names for brevity).

We have all recently submitted blood samples and they are testing for Dravet's. Previously they thought she had Doose Syndrome.

The feeling of isolation that this condition brings can be quite tiring? Lulu is a perfectly normal looking girl and many people don't see beyond that; its only when strangers try to engage her in conversation that they realise "there is something not quite right".

I don't know about you, but sometimes I don't know whether to laugh or cry when she embarks on one of her quests......... she can repeat the same question (ie. I want a MacDonalds) for hours and hours!

Of course, the greatest fear is the future. I am 42 and Lulu is only 5...she's got a very long way to go alone in the future (institution? .... God!). We have a perfectly normal younger girl, Grace (Googie), who will undoubtedly be burdened with this, alone, in the future.

No doubt you share the same fears.

Anyhow, just to make contact! Good luck!

21:35 24-09-2007

Ineke

Geachte Mv

Even een vraag kunnen ze dravet ook vinden doormiddel van chromozonen onderzoek.
ik lees heel veel erkenbaarheid in de verhalen dravet.
\Groet Ineke

21:35 14-06-2007

mirjam

jee wat wordt jake groot maar nog wel herkenbaar als jake.
blijf jake volgen het blijft een speciaal ventje voor me.
gr mirjam kdv nino en kdv wijde wereld.

16:03 08-09-2006

astrid

vol interesse heb ik deze site gelezen gister zijn wij door P.Augustijn gebeld dat hij Yerèll op dravet wil testen 25 sept. word hiervoor bloed afgenomen,erèll is nu 10 jaar en zal er dan eindelijk een naam aan zijn "ziek zijn"gegeven worden we wachten af

15:24 06-09-2006

Deborah

Hoi,

Ik werk sinds kort als ADL-medewerker bij de Biezenwaard. Ik ken Jake dus nog niet zo lang. Vond het erg leuk de site te lezen.Veel achtergrond info. Nu ik het hele verhaal gelezen heb, realiseer ik me pas de impact van Dravet. Mooie foto's ook! Bedankt, vind het fijn om meer achtergrond info te hebben!

Groeten,

Deborah

21:20 31-08-2006

annette van schilt

Hallo marcel,
ik zag dat jij een verhaal gaat vertellen over Jake, op de dravet dag. Wij zijn erbij. Onze Menno is een half jaar geleden getest en het is inderdaad het Syndroom van Dravet. Nu zijn wij ook gecontroleerd ivm onze dochter, wij hopen dat het allemaal met een sisser afloopt.
Tot ziens op de dravet dag

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