Wednesday, April 22, 2009

My daughter, Dawsyn, suffers from a rare form of epilepsy called Dravet's Syndrome (Severe Myoclonic Epilepsy of Infancy). 

Dawsyn's story began on February 15, 2002, when she was 6 months old. Less than 24 hours after receiving her DPT vaccination, Dawsyn suffered her first seizure (30 minutes long). Doctors thought it was probably a one-time occurrence caused by the vaccination. Two months later, on April 15 and 16, Dawsyn had two more seizures (one was 30 minutes, the other 45 minutes). We knew then that something was terribly wrong and began the long journey towards diagnosis. Finally, in July of 2003 it was confirmed that Dawsyn had Dravet's Syndrome. We were told that she would continue to deteriorate physically and mentally until about 4 years old when things would level off. We were naturally devastated. (NOTE: the prognosis for Dravet's children is different now than believed back in 2003 but continues to be an incurable disease that cripples mind and body.)

Dawsyn did not follow the prognosis we were given and actually did very well for the following two years. She continue to have seizures but they were much shorter (seconds to minutes rather than half hour+) and occurred in clusters every 1-3 months. Despite that, Dawsyn continued to learn and develop like every other child. We were thrilled.

In January of 2006, we moved from Lethbridge to Didsbury. We don't know if it was the stress of the move or "something in the air" here in Didsbury, but Dawsyn immediately took a turn for the worse. For a year, we were frequent flyers at the local emergency room as well as at Alberta Children's Hospital. Dawsyn would have seizures that just wouldn't stop. In April of 2006, we almost lost her because she had received so many meds to stop the seizure that it shut down her respiratory system.  We gained better control over the length of her seizures but the numbers and frequency remained alarming.  Dawsyn was having 1 to 12 seizures every 24 hours, usually during the night. In January 2009, Dawsyn started receiving monthly intravenous treatments that have helped cut her seizures down to 3-4 every week.  

Despite the rough time she’s had, Dawsyn continues to learn and grow. She loves school and works hard on her modified curriculum.   She is classified as profoundly delayed academically, socially and physically but we continue to work hard with her and she continues to progress. 

We truly believe that Dawsyn will be healed of this incurable disease and rely on God for the wisdom and strength we need to carry on through the journey. 

Because this disease is so rare, research is slow (we don't get the big funding grants like cancer and AIDS) so the families with children with Dravet's have formed an alliance for public education and fund raising. Please go to www.idea-league.org to learn more.


Dawsyn has just recently been approved to receive a Seizure Alert Assistance Dog from 4 Paws for Ability.  We are currently working towards raising the $13,000 required to train her Service Dog.  For more information about 4 Paws, please visit www.4pawsforability.org.

4 comments:

Cynthia said...

Welcome to the blogging world! I knew Dawsyn's condition was severe, but seeing it written out like that really puts it into perspective. She is a much loved girl.

Anonymous said...

This is going to be amazing way to watch Dawsyn's journey continue.....I am blessed I am apart of it close up and personal...others are not! I know I will be letting my family and friends from the UK that have met you lovely people know about your blog!!! We're all rooting for you xx

The Blog Fodder said...

Now I can get updates without waiting months for an email from you, Ms FA Jeans.

KAREN said...

I feel the same way, now I can read the updates about Dawsyn's journey here. I know that her Mom and Dad have way to much on their plate to keep everyone informed

Karen & AL