#dravetsyndrome

Loading...

Love all of @fullyactivatedcbd’s healing products! They just moved into brand new facilities and are ready to make moves full steam! If you need wholesale or personal amounts let me know! ・・・
Prevention, treatment or recovery. our topicals and tinctures go to work for you. #engageyourECS #endocannabinoidsystem #naturalhealing #plantmedicine #locallygrown #madewithlove #fullspectrumliving #pethealth #humanhealth #fuckcancer #ms #epilepsy #dravetsyndrome #prevention #treatment #recovery #controlyourhealth #cannabidiolcreatives #hustleknowledge #healthyvibes #coloradolife #desertfarming #knowbetter #livebetter

2💬

Loading...

Leyla-Rose has spent alot of time in hospital ❤️Dravet syndrome spectrum disorders are rare genetic epileptic encephalopathies (dysfunction of the brain) with onset during the first year of life in an otherwise healthy infant. ... Mutations of the SCN1A gene cause 79% of diagnosed cases of Dravet syndrome. We love you Leyla-Rose 💜💜💜#wewillfindacurefordravetsyndrome #wewillcontinuetofight #nannalovesyou #dravetsyndrome

1💬

#thisisdravet still up at 6am after only 2 hours of restless sleep. A 2.5 minute seizure that made her hit her face and her nose bleed. No sleep for Mommy nor can I see it anytime soon. Fever spike thank god it’s not her normal 103/104 only 101.6 fever meds given. Constantly using the pulse ox to make sure her oxygen doesn’t drop. Luckily lowest was 90 (though low didn’t stay there long). Dr told me this we avoid ER unless she needs oxygen since every PICU/PEDI room is taken up by children with the flu. So I’m praying her fever doesn’t spike/ox drop/or she becomes lethargic. She’s definitely miserable and exhausted pushing fluids and she loves that she’s getting Gatorade (watered down) because she’s been throwing up and can’t get her to eat. I wish this was easier. Watching her suffer eats at me. She’s this strong little girl that 90% of the time doesn’t let Epilepsy run her life, but it sure as hell runs mine.
#fuckepilepsy #epilepsysucks #epilepsycansuckit #brainsmatter #leynabug #leynastrong #leynasfight #leynaswarriors #dravetsyndrome #epilepsyismorethanseizures #myepilepsyhero #mylittlewarrior #myhero

1💬

Loading...

Same story, different country. For those of you familiar with Vera Twomey's story here in #Ireland, you will empathize with this UK family's dilemma & the unsympathetic response from the UK Gov. Other news is Doctors in Australia and Canada are warning against prescribing #medicalcannabis ... Remember, Doctors endorsed tobacco smoking at one time ... #CannabisLaw #UK #Ireland #cannabusiness #veratwomey #dravetsyndrome #bedrocan #holland #cannabisrefugee

0💬

You my girl are perfection. Truely an inspiration to me and one of the most important little things in my life. Your life will get easier, your family will make sure of it 💜 #dravetsyndrome #dravetsucks #epilespy

5💬

いよいよ、静岡てんかんセンターでも『パープルデー大阪』宣伝します。そして、去年と同じようにInstagramでアップしまーーす。#パープルデー大阪#静岡てんかんセンター#dravetsyndrome #紫の物を身につけて#Instagramに投稿してね#クラウドファンディングもよろしく

0💬

Loading...

Leyla-Rose and her happy place 🌊 💦 💜 Leyla -Rose loves the beach this is her happy place a time to run free and be a normal little girl 💕 but unfortunately overheating is the most frequent seizure trigger in children with Dravet Syndrome.
Therefore, conditions that may cause hyperthermia - such as summer sun, physical exertion, or a hot bath should be avoided so Mum and dad usually head to the beach at dusk or if the day is below a certain temp ❤️ Their Motto is she still needs to enjoy her life and experience certain things Love you Natty and Adil xxx #wewillfindacurefordravetsyndrome #wewillcontinuetofight #nannalovesyou #dravetsyndrome #epilepsywarrior #epilepsyawareness #epilepsy

1💬

CBD may be able to positively affect emotional behavior, mood, sleep, stress, irritability and fear, among other things. Since everything with a spine has an endocannabinoid system, feel free to share it with your pets! #cbd4allwalks #plantmedicine #cannabidiolcreatives #locallygrown #fullspectrumhealing #controlyourhealth #spreadhope #gifthealth #anxiety #stress #mood #pain #addiction #recovery #arthritis #fuckcancer #pethealth #parkinsonsdisease #menieres #dravetsyndrome #epilepsy #prevention #before #treatment #natural

5💬

Loading...

In 23 days Morgan will have a Vagal Nerve Stimulator (VNS) surgery. This has been an extremely tough decision...that started years ago by me saying “never”...and yet here we are. We are at the end of the road on medication for fighting this battle. We have seen a lot of success stories lately within our community...we are hoping and praying to be one of them. #dravetsyndrome #seizures #vagalnervestimulator #prayingforamiracle

10💬

Loading...

Big Top Circus for The Kate’s Story Foundation #dravetsyndrome #katesstory @kelmharrell @lizsellhay

0💬

Who says children with special needs dont place?Janelles Dance today!! #princess #autism #queen #dravetsyndrome #justintimberlake

2💬

First commissioned piece of the year 😍

#love #loss #dravetsyndrome #epilepsy #hugyourbabies

1💬

Leading up to Epilepsy Awareness Month in March I would like to take you on a journey of the day to day life of my precious granddaughter Leyla-Rose 💜 Leyla-Rose has a rare form of Epilepsy called Dravet Syndrome with this syndrome Leylas day to day life is one continuous struggle & challenge💜 I will post a pic each day to show the love and support for my precious granddaughter 💜I love you La La and as long as I am on this earth I will always be here for you love Nanna ❤️💕#dravetsyndrome #epilepsy #epilepsyawareness#epilepsywarrior #epilepsysucks #dravetsyndrome#nannalovesyou #wewillcontinuetofight #wewillfindacurefordravetsyndrome

2💬

Tonight I did a really *amazing* thing. My paw-rents were in the kitchen making dinner. My boy was in the living room, when he suddenly had a seizure on the couch. I ran across the room to him, and barked to let mom and dad know he needed them. This is huge because my boy has a lot of different seizure types, and lately they have been way out of his norm. Also, I am only 1, so I’m still learning. Mom and dad were so proud and gave me tons of praise and treats. They said I did exactly what I was supposed to do! 🐾 ♥️ #DravetSyndrome #Epilepsy #seizuressuck #warrior

9💬

#Repost @pixiedustgrotto (@get_repost)
・・・
Let’s do some bidding for an amazing cause! 100+ shops have come together for an #auction to benefit @makeawish_cwnc !!! All proceeds will be donated to our local #makeawishfoundation chapter in honor of our own #wishkid Mase. We’ve seen first hand the power of a #wish and it’s nothing short of #magical . Now you can share in creating a wish for a child and their family too. Please take a look at the auction rules and check out all of the #amazing items our #shopsmall community has put together for you! #teammasesmagicalmakers rule!!!
. .
#shopsmall #giveback #charity #dravetsyndrome #epilepsy #makeawish #disney #disneyinspired

0💬

Si el sábado 24 de febrero estás en #madrid, no te pierdas la quedada de #RetoDravet. Nos vemos a las 10:00h en Asics House para correr la distancia rara de 7,83k a favor de la @dravetsyndromefoundation 💜 ¡No te lo puedes perder!
.
.
#running #solidaridad #diamundialdelasenfermedadesraras #quedada #correr #kilometros #instarun #picoftheday #carrera #reto #motivation #dravetsyndrome #cgrunator2018 #global #tour #distancia #retodravet #vivircorriendo #investigacion #sorpresa #excellent

2💬

My gorgeous girl! Shes endured so much over the last 3 years! Over 300 seizures, icu and being ventilated 6 times, and yet shes the biggest fighter i know! Dravet will ot defeat us, not define us. Scarlett is and will always be little miss sassy pants!
#dravetsyndrome #epilepsy #awareness #seizure #dravet #scarlettivy #mybaby #3yearold #love #everyday #loveher #sassy #littlemisssunshine

0💬

Un saber diferente. #dravetsyndrome #outsiderart

0💬