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I was looking thru my...

I was looking thru my...

Shop to Support!     I was looking thru my photos trying to find the video of Allie’s 1st seizure, but then I remembered I deleted them all during a fit of emotions (sadness, anger, despair). It hurt too much to look at.💔⁣

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
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