Who is Ella, you ask? Ella is not a storybook character or from a child’s television show, even though she has the cutest name that would be perfect in a storybook. Ella is a beautiful six-year-old girl; the sister of my twins’ preschool friend, and the daughter of one of the funniest ladies I know. Like most girls her age, she goes to kindergarten and loves things like Barbies, Shopkins and her dog, Stanley. She is a pretty normal 6YO except for one thing: Ella suffers from a rare and life-threatening form of epilepsy called Dravet Syndrome and her life is in reality pretty different from that of a normal 6YO.
Until I met her mom, Ella was just a girl in our town that had a rare condition – I had read stories in our local media and yes, I felt sad for what she was enduring but until you have a personal connection to someone, it’s hard to understand what it all means. Even once I met her mom, it really didn’t sink in until I met Ella herself at her little sister’s birthday party. When I logged into Facebook later that night to view pictures of the birthday party (and the AMAZING birthday cake), I happened to scroll through her mom’s Facebook page and found this post (copied with permission):
I’m not serious often, but when I am, it’s not for long and it usually has to do with things related to Dravet Syndrome…I thought I would list a few things that I, personally as a parent, dislike about this horrible condition. I should emphasize that my life doesn’t suck, but it’s stressful at times. And I’m not trying to have a pity party or make anyone sad…I apologize in advance.
1. I will never know what it’s like to be completely relaxed.
2. I will never know my daughter [Ella] off of some sort of medication.
3. I will never get a full night’s sleep, and she will always require overnight monitoring.
4. I will always need to know where all the hospitals are anytime we go somewhere. And most of the time, the thought of even taking a family trip induces a high amount of anxiety and a lot of prepping.
5. I will never be able to allow my daughter to live as free of a life that she craves and deserves.
6. I will always have to educate medical staff about Dravet Syndrome. Dravet moms usually know more about it than most doctors, and that includes what meds can actually make seizures worse.
7. I will never be fully comfortable being away from my daughter.
8. I will always feel guilty for a lot of things I can’t control. I have to say “no” a lot to my daughter and try to explain why she can’t do things that her sister can do. I have to explain to my youngest why we have to leave her with someone when my oldest gets rushed to the hospital.
9. I will always have to know where my bra is (told you I couldn’t stay serious for long). I never know when I’ll have to leave the house in a hurry or by ambulance and I can’t be flippin and floppin all over the place. Also, having gum in my purse is a bonus….
10. I will always be fighting to keep my daughter alive. A huge part of this involves making sure she has access to all possible effective forms of treatment, which the Dravet Syndrome Foundation is working tirelessly to fund research for.
My reaction: Wow…I had no idea…
[Disclaimer on the below – I am not using this post to explicitly raise money for our effort; although, any donation is appreciated – this is really to raise awareness of the condition that Ella endures.]
An ER once doctor told Ella’s mom that every 5-10 minute seizure drains Ella’s body as much as running a marathon. In her short 6 years, Ella has suffered from many seizures; several of them lasting 20-30 minutes in duration. On May 1st, Ella’s mom and I are running a half marathon (Redding Road Race) and have decided to use it as an opportunity to raise funds for the treatment and awareness of Dravet Syndrome. Over 13.1 miles, we will only experience a PORTION of what Ella experiences in one seizure.
This race is symbolic because it starts and ends at New Pond Farm in Redding, CT, where Ella was able to experience a little bit of childhood normalcy in the form of her first school field trip and first bus ride. This is rare because her ability to participate in outdoor activities is limited as elevated body temperatures and excitement can and often will trigger a seizure, and so she is unable to play outside for longer than about 15 minutes at a time.
We will be running under the team name “Ella’s Stinky Socks” – a name selected by Ella with the help of her little sister: http://www.kintera.org/faf/home/default.asp?ievent=1154748. As stated, this is not intended to be a post to solicit donations, but to simply raise awareness of the condition (but if you do choose to donate, THANK YOU). Wish us luck…our official training starts NEXT WEEK!
As an aside, Ella’s mom is a strong advocate of the use of medical marijuana in oil form for children under 18 but has experienced a fair amount of opposition locally. More info here.
I hope that for kids like Ella, a cure or even effective treatment can be found soon. To learn more about Dravet Syndrome, visit the Dravet Syndrome Foundation website. To see more about this condition, see this video: