We don’t record her seizures nor do I have any pics of her hooked up to tubes at the hospital. They are forever embedded in my mind, and are memories I wish I never had.
I never imagined my child would be anything but healthy. I never imagined I would have this IG page (@allies._.allies) to raise awareness for a rare genetic epilepsy called Dravet syndrome. I never wanted to have this story to share.
No one has a baby thinking she will be ill or have lifelong disabilities. No one has a baby thinking you will see her suffer over & over again, & there is nothing you can do to protect her, no matter how much you want to. This is not what I wanted for my baby💔. This is not the life I wanted for myself or my family😭.
There is a mourning process when you find out your child has a medical diagnosis. I mourned for the future I thought she’d have: college, a successful career, & a family of her own.
I mourned for the life I thought we would have. We planned to buy a big house, vacation in Hawaii each year & retire early so we could care for her children when the time came.
All those plans changed when Allie got sick. Dravet syndrome is a real MF’er like that!🤬
The ballet & piano lessons were replaced with endless therapies🤦🏻♀️. College dreams were replaced with Special Ed and IEPs. Hopes for a career & family were replaced with hoping beyond hope that she can AT LEAST live an independent life.
So of course there was great sadness & a lot of anger. Why was this happening to my innocent, precious, brand new baby?! What did we do to deserve this?! Why is life so unfair?!
Yet, some time during the last 6.5yrs, we came to terms w/the cards we were dealt. What can you do but try your very best? For damn sure, we’ll NEVER GIVE UP HOPE on our baby!” — @allies._.allies
Please follow my friend @allies._.allies to show support & love today on Dravet syndrome Awareness Day. 💜 #dravetsyndrome
