Ella loves craft time, mini beast hunts and jumping on her trampoline.

I am Ella’s Mum, Emily.

I love helping others, live music and drinking my body weight in tea!

Ella has GLUT1 Deficiency which means her brain is unable to use glucose for power.  Ella therefore is powered by ketones through a classic ketogenic diet.

Ella has sensory food aversions and is a grazer which means her poor Mum (yes, that’s me!) is forced to work extra hard to ‘normalise’ her ketogenic meals.  Ella is a true slave driver and also eats less if the food doesn’t look‘pretty’.  This all means I am, in my mind at least, creating culinary masterpieces which I hope will prove useful to you and many other families.  Please note, if your ketogenic superstar is anything like mine, ketogenic masterpieces are still likely to be rejected often.  If that happens, you are not alone!

Ella and I will be sharing our adventures with you all through our blog.

I hope our adventures and ketogenic ‘masterpieces’ inspire you and make you laugh!

Until next time….

Emily and Ella ❤

“It has been a while since I put my fingers on the keyboard and wrote about Ella’s ketogenic journey and how it impacts both our lives. I’m back to highlight something that impacts us all on this journey in different ways and how we as a family manage it.

We have just returned from a magical trip to Disneyland Paris. We were able to enjoy the 30th Anniversary magic but not quite ALL it offered. We enjoyed the Light Show, the Parades, spotting the new character costumes and shopping for memorabilia but we could not fully embrace the food. We watched others munching on Mickey icecreams, biscuits and cakes. We watched other children giggle as they got chocolate all around their faces and be cooled down by chilled delights. We watched on but couldn’t join in.

We as a society continue to attach so much joy to food and when your diet is restricted in any way its easy to feel robbed and to feel like joy is being snatched away. It’s particularly difficult when balancing a medical ketogenic diet as there are no alternatives like there are for gluten intolerances for example. It can be very hard to focus on the benefits when presented with the negatives.

Being over 4 years in to a likely lifelong journey, due to the diet being Ella’s only treatment, both Ella and I have mainly accepted that we have to make some adjustments to how Ella gets joy from the food. We take homemade cakes, chocolates and other snacks with us. We make adjustments to her diet so she can have the occasional treats such as McDonalds when we are out and about. Our local icecream man holds some icecreams I have purchased on his van so Ella can join in with getting an icecream when he does his rounds. During parties, I check what is being served and make Ella’s food look the same. Pizza Express cook a pizza for Ella so she can join in there too. We do our best so Ella can get joy from food too.

That being said, sometimes it sucks. Sometimes Ella wants to eat an icecream on a day out to the beach. Sometimes she wants a bite of the chocolate bar her nan is eating. Sometimes she wants to have a “proper” babychino in Costa. On those days, we embrace the anger and frustration. We sit with it and allow the feelings. Both Ella and I will sometimes want to cry about it all and just give up. Those days happen and its OK. On those days, I work hard to consider the alternatives: seizures; movement episodes; non breathing; more regular hospital visits. I also look at other families and children who don’t have any treatment option. I work hard to ensure that we don’t allow the feelings of frustration and missing out take away the joy of LIVING. Something we are very blessed with.

If you too, reader, have days where you start to feel like joy has been stolen, I encourage you to take a moment to sit with the feelings but don’t stay there. Shift to look at what other joy you have. The sparkling eyes you see when the side effects of medications lift because you can wean them due to the diet. The fact your child is in hospital every now and then rather than every week. The fact food is working as a successful medicine. We can all find joy around us when we look. Sometimes our joy just looks different to everyone else’s and that is OK too.

Emily and Ella ❤

Over the past few months, many of us have struggled.  Most of us reading this blog post live with, or are, vulnerable individuals.  A sniffle from a common cold, which can pass in a few days for most, or the heat of the summer sun can trigger seizures that require hospital admissions for many of you, or your loved ones.  With that in mind, it is not unexpected that we may have suffered from a period of unrest, anxiety and even depression.  Yet, as carers, we hold ourselves to account.  We apply pressure and expectation on how we respond and engage with our vulnerable child, loved one or friend.

It got me thinking, what does it mean to smile? How many of us smile when inside we are crying? How many of us reply with “Yes I’m really good thank you” when someone shows concern because the reality leaves us open to collapse? How many of us push on wearing a mask which acts like a dam, holding the pain and suffering back from consuming our lives?

I took a picture of myself a short while ago.  I was smiling (well as much as I do anyway as I don’t like my teeth!) but my eyes showed what was in my soul.  My eyes showed that I was beyond tired and I needed to stop before I broke.  Yet, if a stranger or even a friend had seen me on that day, they probably would have taken me at face value and moved on.

With all we are facing right now, remember to pay attention to your smile, your friends smile, your loved ones smile and ask yourself, “what is in that smile?” Look beyond appearances and connect…. we all need that right now.

Our smiles are not the true indication of happiness…. the windows to our soul provide a clearer indication.  Ask yourself today, “What is in my smile” and if you see pain, anxiety or fear, don’t sit with it alone.  For you are not.

Then, look at the person you care for, or who cares for you the most, to see how much joy you bring to their smile.  Look at their eyes sparkle and know, without any doubt, you are special.

Emily and Ella ❤

For me, these words sum up my experiences as a Mum of a child with unique challenges.
The isolation has often been all consuming, the frustration has led to extreme anxiety and the courage has been thrust upon me thanks to a special little girl who looks at me with so much love in her eyes that I will always fight for her.

Ella created the fire in my belly to keep battling but what saved my sanity was not looking at my beautiful girl who needed me.  What saved my sanity was knowing I am not alone in feeling alone.

Through social media platforms, Google searches, websites and face to face groups, I have been able to build connections with others who are just like me.  Parents, carers, family members and the superstars who keep going, through hospital visits and investigations, all unite through their isolation.

Emma, Mum to the incredible Matthew, plus her team continue to work hard to ensure other families feel hope and connection despite the isolation.  The Matthews Friends Parent Forum brings families together.  It holds out a virtual hand and wraps around a powerful family hug.

The forums and support networks help families like mine connect with other familes walking the same rare pathway to ensure we never feel alone, despite the isolation.

Through these forums, Ella and I were able to connect with and meet another GLUT1 Deficiency Syndrome family in person!  The relief felt by two parents who have been able to share a journey and two little girls who were finally able to play with someone the same is priceless.  These smiles were created because of charities like Matthews Friends who bring families together.

If you are reading this and are feeling alone, overwhelmed or unable to cope, please reach out.  Don’t ever suffer in silence.

Much love,
Emily and Ella

Special thanks to Lou and Grace for the wonderful memories and photographs
Please, if you are able, support Matthews Friends to enable them to continue to support families who are feeling isolated. It really does turn lives around.

Emily and Ella ❤

Ella is a grazer and always has been. Pre keto that meant she ate breakfast on the way to school, or at snack time. Her lunchbox contained yoghurt, lots of fruit and sandwiches and without fail, the sandwiches were only ever slightly nibbled when I collected her at the end of the day. Of course, back then I popped the left overs in the recycling, made a cup of milky tea and some carbohydrate heavy nibble for an afternoon snack, or we popped to Costa for a babychino and some cake and she was content.

As us keto mums, dads and carers know, that approach simply will not do! Food has to be eaten… no picking and choosing the good stuff only and rushing out to play. No, sir.

So, where do we go from here? I have spent a lot of time creating meal plans full of quick nibbles and known favourites to trial in my kitchen for Ella to taste test over the past few weeks, on a timer, to make sure they were school lunch friendly! As a result, I have mastered a weeks worth of keto picnic lunches to suit Ella’s taste buds and sensory needs ready for the first “new school year” since 2018!

I hope these ideas inspire you and help remove any return to school lunchbox jitters you may have! I look forward to feasting my eyes on your tasty creations over the coming months too.

Much love,

Emily and Ella ❤