For as long as I can remember I have known Heather. Sometimes she was my best friend and other times my worst enemy. I was always in awe of her confidence. Heather always seemed happy in her own skin. She didn’t care what people thought of her.
She wasn’t the best at spelling, but she beat out all the other kids in her class to represent at the Division Spelling Bee. If our ball team needed someone to be the dreaded right fielder, Heather didn’t care, she may of sat and picked dandelions, but without her, we wouldn’t have had a team. When a boy asked Heather to roller skate at my 10th birthday party at Wheelies, Heather said yes, while the rest of sat in awe watching them skate round and round and round the rink.
She was fearless.
She was brave.
She still is.
And she passed those traits on to her children.
I have never met Heather and Ed’s 5 kids. Yes, I said 5! Twins Autumn and Jaymee are 15. They also have a 5 year old, 4 year old and their newest addition is just 2 months old.
I told you she was brave, didn’t I?
This is a photo of Heather, Ed and their twin fifteen year old girls Jaymee and Autumn, who have proved the doctors wrong since Day 1.
Jaymee and Autumn have Lissencephaly. Lissencephaly, which literally means smooth brain, is a rare brain formation disorder caused by defective neuronal migration during the 12th to 24th weeks of gestation resulting in a lack of development of brain folds and grooves. It t is a form of cephalic disorder. Terms such as ‘agyria’ or “pachygyria” are used to describe the appearance of the surface of the brain. Children with lissencephaly generally have significant developmental delays, but these vary greatly from child to child depending on the degree of brain malformation and seizure control. Life expectancy can be shortened, generally due to respiratory problems.
Jaymee is currently in the hospital and they are hoping that she will be home in time for Christmas. I have been following Heather’s Facebook updates 3x daily. I wanted to know what could her friends do for her? What could we do for their family? What did they need?
And her immediate response via Facebook was this, “Bring awareness Kyla on these awful conditions and how strong these kids are Jaymee has always written her own story and will continue to. oh if u can get us on ellen that would be pretty awesome hehe cause i just wanna dance with joy.”
She also told me that she would like to “spread the word, end the r word”.
Can we get them on Ellen? Maybe.
Can we quit using the “r word”?
For Jaymee and Autumn and for The Benson Family and their extended families, let’s think before we speak. Teach our children that the “r word” is not okay.
Let’s end the “r word”.
If you would like to help out the family, there is an online account started up. You can give anonymously, even the smallest amount will help them out at this time. Ed is currently laid off and Heather is on mat leave and currently with Jaymee at the hospital, which is over 200 km’s away from their home.
If you would like to make a donation to an organization, these are the ones that are near and dear to the family;
Please give them your thoughts and prayers.
UPDATE 1: People have been telling me that they have been trying to leave comments here for Heather and the blog is not allowing them. I have no idea why that is happening. Please try a few times. I’m sorry about that. You can also email me too firstname.lastname@example.org NOTE it is .ca and not .com and I will pass it along to the family.
UPDATE 2: Do you have a used Laptop, Tablet or iPod Touch? We are looking for something ASAP so that Heather is able to have her own internet access while at Ronald McDonald House. WHOO HOOO SOMEONE WONDERFUL HAS LENT HEATHER THEIR TABLET!
UPDATE 3: As mentioned above and in case you missed it. There is a Gofund me account started in the Benson Family Name. You can donate here.