The Death of  a child has touched us all once again another one of our brave warriors has been sadly taken from us at a very tender age. Connor Latter the beautiful Son of Richard and Sarah of  Great Britain passed away from Dravet Syndrome.

Also known as Severe Myoclonic Epilepsy of Infancy (SMEI) is a severe form of epilepsy.  It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5.  Later, other types of seizures typically arise, including myoclonus (involuntary muscle spasms).  Status epilepticus – a state of continuous seizure requiring emergency medical care – also may occur.  Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others.

In 30 to 80 percent of cases, Dravet syndrome is caused by defects in a gene required for the proper function of brain cells.  Borderline SMEI (SMEB) and another type of infant-onset epilepsy called generalized epilepsy with febrile seizures plus (GEFS+) are caused by defects in the same gene.  In GEFS+, febrile seizures may persist beyond age 5.

I do not know the Latter family personally I met them through our facebook group page for the Epilepsy Warriors Foundation and got to know Connor through the love of his father and his stories and posts about the wonderful young man Connor is. Connor had a smile that could light up the world, Connor had a beautiful soul one that you could clearly see through his eyes, you looked deep into that beautiful boy and you could see the joy, comfort, unconditional love, peace he brought to so many. Children with Dravet Syndrome are no different than any child, they are beautiful, they are gifts and blessings to their family and friends, they love unconditionally, they teach us as adults lessons in life ones that quite frankly we should not need about compassion, about acceptance, about giving spirits, about treating with respect, they don’t judge, they love. The lessons they teach are so amazing and again ones that we should not need to be taught we should already know it.

Connor was a young man that loved life, loved to make people laugh, loved sports, loved having friends and no matter what hardships or health challenges he suffered every picture I have seen that sweet young man had a smile that would light the world all the time, it was on going that smile.  He participated in walks in his honor, again proudly and with that beautiful smile their was never a time I did not see him smile and I know that now that smile is lighting the heavens.

When a child dies, it is one of the hardest things in life to understand. We have lost so many children to Epilepsy or Dravets and again we are looking into the tearful eyes of their parents, and we see one another. We know that without divine help, we could not bear that pain. We think about a precious life snatched away before it was fully formed, like a flower snipped from the stem just as it was beginning to bloom. We question “Why” but only God knows the real answer to that question. But what I do know is that for whatever reason God needed Connor more right now and that the one thing that is getting me through this new loss is knowing that he is Free. No more pain, no more suffering, no more tears, just happiness and joy probably playing with John, Danny, Scott Jr, Chelsea, CeCe (Cecelia), Adaleigh, Jordan, Piper, Joey, Donna, Eric, Kyle, Ryan, Savannah, Ezekial, Sam, Christopher Adam, Brayden, Joseph and having a good time and that puts a smile on my face the way it did from the very first time I saw his precious face and that infectious smile in his photographs. He is another one of our Angels that is going to be with each of us helping us in our cause and advocacy work that we need done to get the funding and research we need to find and get the CURE.

If I can offer any peace or comfort to both his parents as its so hard words never come easy and people really do not know what to say I can offer you this. I offered this to another parent who sadly and recently lost a beautiful Son and I believe in my heart for this to be true. Always remember the good times, their were many, always remember he loved you, he did, always remember that infectious smile, its in your heart beating. Remember that even though he is no longer physically with us he has never left you, he is in your heart and soul, when you look up to the heavens at night and you see the brightest star sparkling like diamonds in the sky that is Connor winking at you saying “Hey Mom & Dad don’t worry I am doing great, you taught me that” when you see a rainbow after a storm that is Connor telling you “Thank you for calming my fears and keeping me safe for seeing the beauty in me through my eyes”  When you hear the rain that is Connor telling you “Hey don’t cry you gave me the best of everything,you gave me the best thing a boy ever needed a family” celebrate his life for their is much for you to celebrate and know that one day you will see him again and what an occasion that will be.

Connor, thank you so much for touching me and all those who knew and even those that did not know you personally but only through our extended family it was an honor, privilege to know, learn about and love you. You taught us all about fighting and staying strong and we will honor your memory every day. Epilepsy/Dravet Syndrome will not win this battle and we know you will be guiding me and this foundation over the years so that we can stop the madness and find the cure. God Bless You Sweet Connor. This is a favorite song of mine sung by an 8 year old Gospel Singer I hope it brings comfort. Give our love to all our Children and let them know we honor, love and miss them every day.

http://www.youtube.com/watch?v=DDDlxmsciqY

From my family and our foundations family we want to extend our deepest condolences to Connor’s Family during this most difficult of times. We love you and your in our thoughts and prayers as is Connor. Gone but never forgotten. God of light thank you for helping to guide us out of the darkness of pain and grief that occurred after the loss of our beautiful children. Now that they are gone every single memory is both precious and holy. Bless each memory we have of our children so that they will continue to live on in our hearts and minds forever.”

“WHEN GOD CALLS LITTLE CHILDREN”

When God calls little children
to dwell with him above,
We mortals sometime question
the wisdom of his love
For no heartache compares with
the death of one small child
Who does so much to make our world,
seem wonderful and mild
Perhaps God tires of calling
the aged to his fold,
So He picks a rosebud,
before he can grow old.
God knows how much we need them,
and so he takes but a few
To make the land of Heaven
more beautiful to view.
Believing this is difficult still
somehow we must try,
The saddest word mankind knows will always be “Goodbye.”
So when a little child departs
we who are left behind
Must realize God loves children,
Angels are hard to find.

To read and learn more about Dravet Syndrome or make a donation please contact http://dravet.org/ and help us spread and raise awareness so that we can do everything possible to prevent another loss and another family broken apart.