Hope For Sydney

Sydney is a beautiful 6 year old who was born with a genetic mutation which causes Dravet's Syndrome, (Dravet syndrome) previously called Severe Myoclonic Epilepsy of Infancy (SMEI). There are less than 500 confirmed diagnosis in the world. Although many more are suspected to be un-diagnosed or mis-diagnosed.  

There is no known cure and she will never outgrow it.  This syndrome causes every type of seizures as well as progressive mental and physical developmental delays.  Many Dravet kids are non mobile, non verbal or both, and severely retarded before puberty.

Sydney is on the mild side of the delay spectrum thus far, PRAISE GOD!

Sadie is Sydney's little sister. She has an unrelated neurological dysfunction called Severe Apraxia, which prevents her from talking. 

I stay home to care for the girls while my husband works as a Deputy Sheriff, assigned to the Fugitive Apprehension Unit.  We live in Kentucky and dedicate our lives to helping other special needs famlies and giving the best possible care to Sydney and Sadie. 

Best Wishes to you and yours!   

The Nelson's

Feel Free to contact me if you have questions.  HopeForSydney@hotmail.com

Happy moments, Praise God.
Difficult moments, Seek God.
Quiet moments, Worship God.
Painful moments, Trust God.
Every moment, Thank God.

The International Dravet syndrome Epilepsy Action League (IDEA League) is an international partnership of parents and professionals united in the purpose of creating greater awareness and understanding of Dravet syndrome.  The League was founded by us parents in October, 2005.  It’s mission is to promote awareness about and research for Dravet syndrome and related genetic, febrile sodium channel epilepsies and to provide resources and support to improve quality of life for affected individuals and families.  It is the only organization dedicated specifically to this invaluable purpose.  I am proud to be a part of this organization!

seizures" "Dravet"  "Dravet syndrome" "Dravet's" "Dravet's Syndrome" "Epilepsy" "SMEI" "smei" "severe myoclonic epilepsy" "Severe myoclonic epilepsy of infantcey""Apraxia" "speech" "therpy" "Homeschool" "Kentucky"  "cincinnati" "Global Apraxia" "apraxia of speech" "Speech delay" "epilepsy" "Dr. Laux" "Dr. Dravet" "Charlotte Dravet" "Ideal League" "ataxia" "orthos" " orthotics" "Make a wish" "thoughts" "store" "hope for Sydney" "Sheriff" "deputy" "KCSO" "Service Dog" "four Paws for ability" "4 paws for ability""4 paws 4 ability" "Northern Kentucky" "sign Language" "Sign Exact English" "Steripental" "Clobazam" "Frizium" "topomax" "Depokote" "Ativan" "Angle Flight" "Donate" "Terminal" "Syndrome" "MAE" "Myoclonic" "Myclonic Astatic Epilepsy" "Atypical absence"  "tonic Clonic seizure" "Drop Seizure" "WCPO" "9 on your kids side" "ABC news" "abc" "homebirth" "home birth" "Lorazapam" "Complex partail" "Partial" "seizure alert" "seizure alert dog" "Michael Freeborn" "Areotec" "Give Kids the World" "Disney World" "fundraising" "Medicaid" "Resources" "Sydney Nelson" "Sadie Nelson" "Rooney" "Midozalom" "hopeforsydney" "Dina Nelson" "Eric Nelson" Kenton county" "kenton county KY" "SCN1A" "genetic mutation" "SCN1A gene test" "Athena Labs" "Dina McMahon" "hope for sydney" "tates creek" "Lexington" "infantile spasm" "syndrome" "disorder" " LGS" "LKS" "Dogs"  "Chincinnati Childrens Hospital""CCMCH" "Mickey Mouse"" Aviation" "Freeborn and Associates" " Chicago" " IVIG" "Keto" " Ketogenic Diet" "seizures" "Dravet"  "Dravet syndrome" "Dravet's" "Dravet's Syndrome" "Epilepsy" "SMEI" "smei" "severe myoclonic epilepsy" "Severe myoclonic epilepsy of infantcey""Apraxia" "speech" "therpy" "Homeschool" "Kentucky"  "cincinnati" "Global Apraxia" "apraxia of speech" "Speech delay" "epilepsy" "Dr. Laux" "Dr. Dravet" "Charlotte Dravet" "Ideal League" "ataxia" "orthos" " orthotics" "Make a wish" "thoughts" "store" "hope for Sydney" "Sheriff" "deputy" "KCSO" "Service Dog" "four Paws for ability" "4 paws for ability""4 paws 4 ability" "Northern Kentucky" "sign Language" "Sign Exact English" "Steripental" "Clobazam" "Frizium" "topomax" "Depokote" "Ativan" "Angle Flight" "Donate" "Terminal" "Syndrome" "MAE" "Myoclonic" "Myclonic Astatic Epilepsy" "Atypical absence"  "tonic Clonic seizure" "Drop Seizure" "WCPO" "9 on your kids side" "ABC news" "abc" "homebirth" "home birth" "Lorazapam" "Complex partail" "Partial" "seizure alert" "seizure alert dog" "Michael Freeborn" "Areotec" "Give Kids the World" "Disney World" "fundraising" "Medicaid" "Resources" "Sydney Nelson" "Sadie Nelson" "Rooney" "Midozalom" "hopeforsydney" "Dina Nelson" "Eric Nelson" Kenton county" "kenton county KY" "SCN1A" "genetic mutation" "SCN1A gene test" "Athena Labs" "Dina McMahon" "hope for sydney" "tates creek" "Lexington" "infantile spasm" "syndrome" "disorder" " LGS" "LKS" "Dogs"  "Chincinnati Childrens Hospital""CCMCH" "Mickey Mouse"" Aviation" "Freeborn and Associates" " Chicago" " IVIG" "Keto" " Ketogenic Diet" "