Penelope’s Parents

Penelope’s parents. Diagnosed with epilepsy in June 2018 (six months old). Diagnosed with Dravet Syndrome in August 2019 (20 months old). Keto Diet in Sept 2019

[Penelope’s Parents @ParentsPenelope]

UNBELIEVABLE!!!
What a few days we had at Disneyland Paris 😍
I wish we could talk to ourselves from 2 years ago and explain that times like this would be possible.
P went on loads of rides, met her hero’s and made lasting memories.

#dravet

[Penelope’s Parents @ParentsPenelope]

@DravetUK @CenterParcsUK Thank you - Hopefully we can all be together next year 🤞🏻💜

[Penelope’s Parents @ParentsPenelope]

On Dravet Syndrome Awareness Day, we would like to share a few photos of Penelope taken last weekend at @CenterParcsUK.

The lows are low but the highs are so high. 💜💜💜

@DravetUK
#Dravet
#DravetSyndromeAwarenessDay

[Penelope’s Parents @ParentsPenelope]

@LoveMeadowhall @DravetUK As parents of a Dravet sufferer and Sheffieldiers , thank you so much for doing this. 💜💜💜

[Dravet Syndrome UK @DravetUK]

Help make #EveryFamilyCount this #DravetSyndrome Awareness day. Please watch our video & share far & wide to help find undiagnosed children & adults and ensure they have the support they need and know that @DravetUK is here for ALL families with #Dravet.
https://t.co/HfWP1iJfJe.

[Epilepsy Action @epilepsyaction]

We love this 💜

[Penelope’s Parents @ParentsPenelope]

Happy International #EpilepsyDay!

💜

[Dravet Syndrome UK @DravetUK]

Wishing all our friends across the world who are living with #DravetSyndrome and other #epilepsies a very happy International #EpilepsyDay & sharing this timely reminder from @IntEpilepsyDay that - for all of us - epilepsy is #morethanseizures. With much love from @DravetUK💜

[DPAC Sheffield #FightTheRealEnemy 🏳️‍⚧️🏳️‍🌈♿️ @DPACSheffield]

#Sheffield parents.
Useful local orgs for parent/carers;
•Sparkle Sheffield- Autism specific support and online zoom clubs.
•Sheffield Parent Carer Forum- for all families with disabled children.
•SENDIASS-advice line.
•Disability Sheffield-advice for disabled adults.
RT

[Penelope’s Parents @ParentsPenelope]

@GeneticAll_UK @DravetUK Thanks for sharing! 💜

[Penelope’s Parents @ParentsPenelope]

Been such a long time since we have posted.

Penelope has been good during lockdown and we have been chosen to take part in the #fenfluramine drug trial. Early stages so not much to report

P is still going strong on #keto, as well as her other three meds

Hope everyone is well x

[Penelope’s Parents @ParentsPenelope]

@StokeTx 💜💜💜

[Stoke Therapeutics @StokeTx]

The first person in the world has received a dose of STK-001. Thank you to patient #1 and your family for your bravery and the trust you have placed in us.
#StokedAboutStoke

[Penelope’s Parents @ParentsPenelope]

Yesterday was the best family day we have had in over two years.

Six months ago, Penelope couldn’t walk across a room without being ravaged by seizures.
Yesterday she spend three hours with her siblings playing on the beach. 💜💜💜💜

#dravet #epilepsy #ketodiet #beachgirl

[Penelope’s Parents @ParentsPenelope]

ADVICE NEEDED:

We have been fortunate enough to be granted direct payments to enable us to employ a personal assistant for Penelope.

Just had the paperwork thought & it looks quite daunting!!

Could anyone offer us any advice going forward?

#directpayment #dravet #epilepsy

[Dravet Syndrome UK @DravetUK]

It's International Dravet Syndrome Awareness Day! Please help raise awareness by sharing this five-fact thread 👇

1 - Dravet Syndrome is a life-limiting #epilepsy that affects around 1 in 15,000 children and adults in the UK. 1/5

#DravetSyndrome #DravetSyndromeAwareness

[Penelope’s Parents @ParentsPenelope]

Not only is it Dravet Syndrome Day, but today also marks 6 month since our last hospital visit to @SheffChildrens.
We know we cannot take this time for granted! Massive thanks to all those who continually support us.
@DravetUK
#DravetSyndromeAwarenessDay

[Penelope’s Parents @ParentsPenelope]

22nd June 2018 - Two years to the day since we started our Dravet journey. Its not what you hope for when having a child but thank you so much to all those who have entered our lives over the past two years. The support we have received is overwhelming💜💜#dravet #epilepsy #keto

[Penelope’s Parents @ParentsPenelope]

Happy Easter Everyone🐣

Mrs P has baked some amazing #keto buns for Easter.

Made with coconut and almond flours, oil and milk with full fat cream cheese frosting.

Ratio is 3:1
Carbs 2.6
Protein 5.5
Fat 24.8 🤩

#keto #Dravet #epilepsy #Easter

[Penelope’s Parents @ParentsPenelope]

@matthewsfriends Massive congratulations Alice.
Well done 👏🏻👏🏻👏🏻👏🏻