Mito Community Wall

We first heard about The Bloody Long Walk in 2016, when our daughter Alana was diagnosed with mitochondrial disease. Every year since, we’ve had an Act for Alana team made up of friends and family complete a Bloody Long Walk event. The walk became a way for us to come together and do something positive in honour of Alana. At every event, we are reminded that we are not alone, but are part of a large community of people completing the challenge together, for mito. Thank you to each and every one of you.

We first heard about the Blood Long Walk in 2019, when our beautiful baby girl Ziya was still with us and had been diagnosed with a rare subtype of mitochondrial disease. Sadly she passed away days after the actual walk and I was unable to be on Team ZIYA because of her end-of-life stage. However we had rallied up up to 60 friends, acquaintances and well wishers and they all started and completed the entire walk with so much love adoration and enthusiasm we are forever thankful to them for this and they raised tens of thousands of dollars in Ziya's honour for the foundation. It was such a paradox and monumental moment to see everyone who had dressed up as superhero for Ziya and supported us as a family and as a community. The walk embodies so much for us and the foundation have been so supportive to us year after year. We are so grateful for everything

I was officially diagnosed with mitochondrial disease in 2018 at the ripe old age of 48! It was a long journey to get a diagnosis and then a gut-wrenching reality to find that there is no real treatment and definitely NO cure! Thankfully, I was put in touch with the Mito Foundation and through them I heard about the Bloody Long Walk. Strangely enough, I have ALWAYS loved walking… I would often refer to myself as the Forest Gump of walking. I didn’t want to take this diagnosis lying down! So, I did the only thing I knew how to do…with family and friends, I signed up “Kim’s Keen Team” for three Bloody Long Walks back-to-back! Soon after signing up, I found out that a friend from work had lost two beautiful boys in his extended family to mito. His family also takes part in the Bloody Long Walk...if I needed anymore motivation this was it! Each year since then “Kim’s Keen Team” has proudly walked in at least one BLW event! This year has seen me resign from the job I loved because of what mito has done to my body. (Seizures, vision & memory loss, I can no longer eat solid foods ?) So, even though it gets physically harder for me each year, I look forward to seeing the familiar faces and meeting and talking to new people along the way. I will be meeting the most amazing and resilient people along the way; they give me the strength and courage to keep going. The Bloody Long Walk for me, is not only a great chance to meet & mingle it gives me hope that one day there will be treatments and ultimately a world without mitochondrial disease.

As a member of the mito community, I know that putting yourself and your story out there isn't always easy. But it gets easier when we think about why we're doing it - in my case, to honour my brother Pete and my mum Lorraine both of whom died from mito ... and in the hope that it will make a difference for those to come. I've been involved in every Bloody Long Walk since the first event in 2013 in one way or another (no, I haven't walked them all!). I've seen the tens of thousands of people who get on board with this great cause to make a real difference to Australians impacted by mito. If you're reading this, then please know that you are doing an AMAZING thing! It makes such a huge difference and gives us the inspiration to keep on walking. THANK YOU!!!

Henry's Heroes has been participating in The Bloody Long Walk since 2016 in memory of our son, Henry. Our aim is to complete each walk but so far we have been to Sydney North, Canberra, Adelaide and undertaken the virtual walks. Some we have doubled up on. We are eternally grateful for the support of our community along with the Mito Community to raise funds and create awareness around Mito. We look forward to the walks every year and try and chat with as many walkers on the way to hear their stories or share ours.

I was diagnosed in 2016 with Mitochondrial disease, which is when I discovered the Mito Foundation. One day I hope to complete the walk myself and be surrounded by support for a great cause. Until then, THANK YOU to every individual who takes part and raises awareness for the mito community.

Our Team Hayden and Jacob are walking in the Sunshine Coast in memory of our beautiful boys who have both passed away from mito. Jacob was 3 and Hayden was 14, they had a great sense of humour and loved life. We have found the walk always has a great community feel on the day and it is great to see people out cheering us on along the way. Thank you so much for taking this 35km challenge, you may feel like you can't make it, but keep going. As you get closer to the end, you get another burst of energy and motivation to make it to the finish line and a huge sense of accomplishment once you finish.

I was diagnosed with mito when 19 years old. I was a dancer, ran 10km marathons/park runs, and was a second-year student nurse when things really started to get hard and I lost all those things that I loved. Mito first started progressing when I lost my hearing in under 6 months, then my muscles started to go and I couldn’t walk or use my arms properly. Now I have optic nerve damage, regular headaches/migraines, speech dysarthria, cold intolerance, muscle spasms, muscle weakness, deafness, hallucinations, child-mind, chronic pain, anxiety, depression, bladder retention, asthma, bad balance, droopy eyelids, high heart rate (220bpm), and trouble eating (lots of stomach issues).   I’ve now adapted my life. I have a service dog (Teddy), wheelchair and other equipment, support workers, my family as support too plus my fiancée and many therapists. I started my own little business making treats for pets as a qualified animal nutritionist, and also consult and do diets for animals.  I won’t give up this fight and I’ll fight with my friends who have this illness too, and for those we have lost. We are warriors and we fight together. Thank you so much for supporting The Bloody Long Walk. 

I haven’t personally participated in the walk, we don’t have it where I am living. But I’m fundraising in a different way. I joined the mito community because of my daughter Alayah. Alayah was only 2 weeks old when we first heard the words mitochondrial disorder. She was only 10 weeks old when she lost her battle and passed away. After she passed, we were put in contact with the Mito Foundation and then we heard about this walk. For everyone walking, for everyone who is making awareness, for everyone who is raising money. My family is forever grateful for you because of what you are doing. With the money that gets raised, I hope that one day there’s a cure so no one else has to ever say goodbye to their baby like we had to.

We learnt about Mitochondrial disease in late 2017 when our youngest daughter Maeve was diagnosed with an aggressive terminal illness called Leigh's Disease. We were very grateful to find out about the bloody long walk and connect with MITO atraight away. We have seen the great work MITO does with Maeve being fortunate to qualify for a flagship program at the Royal Children's Hospital which was organised by MITO. We also were also involved with the MITO team to get the mitochondrial donation bill through parliament in 2022 and have seen what a fantastic organisation MITO is. The Bloody Long Walk keeps the foundation going and helps so many Australians like Maeve. We look forward to seeing you out walking!

In 2016, I was formally diagnosed with Mitochondrial disease (mito). Mito is a genetic disease that can affect any organ at any age. For me, it started with my eyes. I was experiencing double vision. Innocently I thought I needed glasses. That's when my life as I knew it changed forever. After 18 long months, I received the diagnosis of mito. Being told mito is a progressive disease, and it is almost impossible to say how the disease would impact my life, was devastating. But worse is learning that there is NO treatment and NO cure. I first learned about the Blood Long Walk in 2016 and admired everyone for taking on the challenge. But this year… IS MY YEAR! I’ll be concurring the 35kms on Sunday 18th September in Perth! Taking part in the Bloody Long Walk will be a massive achievement. It will mean my symptoms will increase for the following week, and I will likely experience extreme fatigue, muscle spasms, difficulty swallowing and chronic pain. But while I'm on this earth and have a voice, I'll tell everyone about mito and me, hoping one day there will be a cure, so future generations won't have to live with mito. Thank you for supporting mito and me!