The Story of Mito Warrior Dot

I’ve been trying to write this post for a really long time, but this one is extremely close to home and to my heart, and I just haven’t been able to fight through the tears to find the right words. So instead, I’ve decided to share Dot’s story through the words of her Mum Suzie…because the only thing that feels ‘right’ in these moments is the overwhelming love and courage of this family: forever a family of five.

Dot Winifred Georgiou was born on 10th June 2019, surrounded by the love of her Mum Suzie, Dad Kristan and big sisters Elsie & Hattie.

At just a week old, Dot was admitted to hospital with hypothermia. Suzie wrote: “there is no reason behind it as yet but all major infections have been ruled out. She gave us all quite a scare. Little Dot is not yet able to maintain her own temp and needs our skin to skin cuddles to bring her back up when she drops…lucky the best thing to do is sit with a sleepy newborn and cuddle the day and night away. Dottie you may be our third but you have certainly got everyone’s attention little lady.”

In October 2019, at almost 4 months old, Dot had further investigations and tests at hospital for failture to thrive, floppiness, sleepiness and developmental delays. And then the devastating news came that Dot had been diagnosed with Mitochondrial Disease (Mito). “There is no cure or treatment and her little life is prediced to be short as she has shown signs of it so young.” While the family awaited further genetic testing to determine the specific details on the type of Mito and how it would affect Dot, they inspired others with their courage, telling their friends and family that while “we will never be ok again…our only hope is that Dot knows happiness and love for her life.” Their desire to protect all three of their girls from sadness and what was to come, was truly heartwarming at such a heartbreaking time. They encouraged everyone to “please love your children with every beat of your heart.” The community heard; they rallied; they prayed.

Just days later, ‘Team Dot’ was created: a large group of family and friends who came together to #DoItForDot and participate in The Bloody Long Walk. ‘Team Dot’ raised a staggering $38,000, each and every sweaty step of the 35 kilometre walk helping to fund research into desperately needed treatments and cures for this devastating disease. “I sat in complete shock at the donations, the walking team, just name after name of our friends, our community, our village for our girls. Then I cried. I’ve been part of fundraisers before, I love a good rally of the troops, but it’s never been personal. It’s never been for my home. For my child. For my Dot. For OUR Dot. When we found out Dot has Mito in our meeting we were asked if we had support. I remember saying with pride that we were from Lobethal! There is something so comforting to know it’s not just words, but truly people who are 'here if you need'.”

Suzie continued to share their story openly and honestly with their tribe in the hopes of bringing knowledge and understanding. Dot was on a strict 3-hour feeding schedule via a feeding tube. “Feeding Dottie is like being on a newborn routine. It’s strict. It’s not feed and go. It’s trying with a bottle, under 30mls left it manually goes through her tube, over 30mls the machine comes out. Throw in another child waking up here and there through the night, Dot waking at 4am for chats which we welcome with loving arms and bring her into our bed for snuggles. I’m not complaining! Not one bit! We wake up happily and do all of them.”

And then Dot started to develop. She learnt to pull her tube out and this ability was an ironic win! She was giving smiles, even if once a day. She began ‘chattering’ away. She reached 5kg. The relentless appointments were actually encouraging as the specialists discussed early intervention and supports through NDIS. “And all I heard was TIME, these things are needed because we might get TIME! Music to my ears!! I’m in no denial, I know the outcome, we still don’t know what type of Mito she has as yet, I know there is no such thing as a ‘good’ one, but to get time with Dot is what we need. We have an incredible team of doctors that believe in hope and being proved wrong.”


But in late November, Dot began to lose some of her strength. “Unfortunately the bumbo has been put away again. Reality is for 30 seconds she must have balanced before flopping and she’s never done it again, not even close, can’t even get her into it actually. She still needs support like a newborn. And support her we will”. Dot was approved for supports such as a disability pram, highchair and bath seat, which allowed her to be safe, comfortable and included. Cuddles became few and far between, as her family made the most of the smallest little moments when Dot would nuzzle in. “Dot really doesn’t like being held. It’s something that’s taken me some time to adjust to, because it’s in our nature to hold our children when they are upset or hurt. But Dot simply wants her space.”

In late December, as fires tore through their home town, Dot was admitted to ICU. “Long story short, she’s had several ‘turning blue’ episodes but is in the best place and being monitored to work out what’s happening. We received some wonderful news about her Mito this week, but it’s now too hard to celebrate it as our town hurts and she’s taken a little detour. We will wait until we are out of the woods to happy dance.” Sadly, Dot spent her first Christmas in ICU (with a short day pass for Christmas lunch), but her family as always - along with the hospital staff - made sure it was special for the girls. “It came without ribbons. It came without tags. It came without packages, boxes or bags. Maybe Christmas, he thought, doesn’t come from a store. Maybe Christmas perhaps…means a little bit more” – Dr Seuss.

A couple of days later, Suzie shared their hopeful news: “Dot has a rare Mito disease called EARS2, of which she is 1 of 15 known cases in the world. In a very brief nutshell, they predict she will either develop a bit over the next 6 months, remain stable or decline in her abilities, then once she reaches about 1 years old she should stay consistently like that for her lifetime. We can’t predict what her lifetime is, but 12 of the known cases are alive, one case very similar to hers is 6 years old! A gift of TIME! Where to from here? We plan to throw everything into improving her abilities for the next 6 to 12 months particularly. We are under no disillusions, her floppy core has not improved and we still carry her as a newborn. We don’t expect this to change, but hope to work on her arms, legs and mental abilities. We've been able to start talking to the girls more about Dot being disabled for her life. It's nice to not focus on preparing them for the possibility of the end, rather just focus on the now whilst they are young, and deal with anything major down the track as they grow older and are able to understand more. The wonders of the gift of time.”

As the Georgiou family welcomed the New Year, they embraced positivity – something that always shone through in Suzie’s posts and continued to inspire everyone they know. “Goodbye 2019! You were a rollercoaster of happy times with the arrival of our Dot Winifred, and absolute saddness. But to be honest when we first found out about Dot's Mito, just making it to Christmas seemed unachievable, and here we are! We know 2020 will not be easy, our little boat we've smooth sailed through our lives so far is definitely on it's own uncontrollable path. It's not the path we had planned, and certainly not the path we wanted. But its Dot's path, so it is exactly the one we will go through together. 2020, I choose for you to be a POSITIVE year.”

Over the following two weeks, Dot continued to have frequent episodes which meant more visits to hospital. The episodes weren’t caused by a virus, and an MRI was performed to determine the future. Suzie’s next post was crushing. “The gift of time was not meant to be. It was the hospital trip we feared the most, I felt it the moment I stept out of the ambulance. Dot has declined rapidly, confirmed by an MRI today that the Mito has spread to all white matter in the central brain controlling her bodies communication, and to her nervous system confirming why we haven’t been able to hold and touch her recently. We knew it was not looking good, but needed the report to confirm that time will not allow her to regain anything. She lost her smile 2 stays ago, the next her eye engagement, and now we prepare to bring her home from what will be her last time in hospital. She is not able to be on any incline position so any car travel is out once we get her safely home, with permission granted to hold her flat in the back seat for her final ride home. It is understandably tough for Elsie and Hattie who now know Dot will die soon. Both were able to raise this topic in their own way this stay with us. They now know she will live in heaven and the invisible string of love will link them to her. We are broken. No amount of time will ever be enough, but we are thankful for every minute we did receive from her first visit to hospital at 9 days old. We know we were so close to losing her that night, and have created memories which could well have never been. Dot will now decide when her time is, as we keep her as comfortable as we can, surrounded by the only thing we have been able to give her for Mito, love.”

The family spent the next two weeks soaking up their beautiful Dot at home. Suzie continued to post the most beautiful, unforgettable moments, such as snuggles with all of her girls – something she asked that we never take for granted. “Any photo you see of us holding or touching Dot with a big smile on our faces, it's not because we are strange at a time like this... more that joy from being able to enjoy them now she’s getting moments where she can bare it, even if just for a few minutes.” She wrote about strength; each post bringing tears to my eyes as her words were full of such heartache and such courage, but oh so much deep, overwhelming love. “Strength. It's a comment we've received a lot over the last few months with Dot. But to be honest, it doesn’t feel like there has been any other option. What choice do you have against a diagnosis as brutal as Dots? No chance to fight. No chance to slow it. Nothing to do but watch, love and hope? And how we hoped, we hoped for a few weeks when we first found out, and got it. Then we hoped for a family holiday, and got it. Then we hoped for Christmas... but the hope even left at the last hospital trip, and all that's been left is to prepare for something we never want to happen. And we don’t want it, but at the same time, we have to watch slowly each moment leading up to it…But strength. It's the only option when you choose to have a family of three children. Strength to be with Dot in these times for her, but then to keep the magic of childhood in our home for our big girls.”

And then came the unimaginable news that you can never prepare for; the news that no parent should ever have to bear: “Yesterday was the day, we felt it the moment it started, and Kristan and I were with her and supported her all day together. She was peaceful, however tough it was on both of us and will continue to be. Forever a family of five, always parents to three beautiful daughters. Our beautiful Dot Winifred Georgiou. 10 June 2019 to 30 January 2020.”

I feel so blessed to have known Dot, to have heard her story, to have shared her fierce journey. Dot has inspired individuals and communities. She has given perspective and hope. She has forever changed the lives of so many and my goodness has she made her mark on the world! Dot, you are so loved.

One thing that shone brightly through all of Suzie’s posts was their hope for the gift of time. And now, the Georgiou family’s biggest wish is for other Mito families to get the opportunity of time. “We have had so many kind people ask us what we need. Please consider a donation to the Mito Foundation in loving memory of Dot.” You can donate via the link below:

https://fundraise.mito.org.au/donate/ 

And finally, I want to share something that Suzie wrote personally to me that I desperately hope will stay with you as you go about your day to day life: “The waiting is the best gift, waiting with her and just being completely with her. I wish I could wait forever…I hope her life brings perspective to others, to cherish their time and choose happiness.” Let Dot be your daily reminder to just be.

Fly High Dot Winifred. We will never stop speaking your name.

 

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