Run for Stella - 25km Trail Run

Meet our beautiful friends Maddie, Mitch and Stella.

BRAVE, STRONG & RESILIENT

These words not only describe the beautiful Stella Rae, who was diagnosed with NEXMIF Encephalopathy at 12 months of age, but also describe her incredible parents Maddie and Mitch.

This family received this life changing diagnosis when Stella was 12 months old, after months of testing and appointments trying to understand why her development was not progressing.

“12 months ago our lives were flipped upside down and irreparably changed. My heart still aches the same. I still go to bed with that same pit in my stomach. I still have so many questions and so much uncertainty. But, I still have hope. I still experience joy, and I will always marvel in all that you are and all that you’re meant to be” - Maddie

What this means for Stella:

NEXMIF includes a number of challenges for Stella and her family including low muscle tone, intellectual disability and most debilitating for Stella - refractory, developmental Epilepsy.

Stella’s journey has already included 6 antiepileptic medications, rescue meds, ketogenic diet and now a trial of CBD oil, but they are yet to gain seizure control for Stella. As you can imagine, having hundreds of seizures a day has significantly impacted her development requiring multiple therapy appointments a week. On her recent EEG (a test to measure our brain activity) Stella had over 120 seizures in 20 hours.

The most amazing support for Stella:

Maddie and Mitch have been the most incredible advocates for their little possum, Stella. They have fought, pushed, listened, questioned and taken on the advice from the medical world. They have watched some things improve, while others take turns for the worst. They watch their little girl day in and day out to do all that she does, and what she does and what she has achieved is JUST INCREDIBLE!

The challenges that are tough to face:

For a long time Maddie and Mitch have had to hang on tight to each other when they haven’t been listened to by medical teams, whilst they push for the funding to assist Stella, and when they have appointments cancelled at the last minute. Brain surgery has been put in to the mix, but without education and understanding, instead by receiving a text for an appointment to attend a surgical consult.

This family has been through WAY TOO MUCH! Whilst their days and nights are filled with ongoing challenges, they continue to fight, they continue to push to make meaningful change, and they continue to love and support their beautiful girl in every way possible.

Regardless of all the trauma this journey has already and will continue to cause, they are the most positive people we know. Regardless of going above and beyond for their daughter to make change not only for Stella, but for other kids with treatment resistant conditions, they continue to both work jobs in the community. Maddie is an Occupational Therapist, and spends her working days going to help so many other people in the community , whilst Mitch works full time and still finds the time and space to attend several appointments.

It's our turn to support them:

This family has already been through so much and we want to help them directly. They have fundraised tirelessly for the Epilepsy Foundation, and this time it's our turn to fundraise for them.

Maddie and Mitch need to repeatedly take unpaid leave from work to allow Stella to attend medical and therapy appointments, and be by her side when she requires sudden admission to hospital. The cost of petrol, medications, and appointments on top of taking unpaid leave is an additional burden we would like to help alleviate. The financial stress for this family is huge and never ending. We are raising money to reduce the financial strain on Maddie and Mitch so they can spend more of their energy focusing on Stella and her needs.

We will fight for Stella and her family:

We have pulled a team together from Katherine, NT to tackle a 25km trail run.

Tara and Sarah will be running the Noosa 25km Trail run in March 2024 and Megan will be running the 25km trail run along the Larapinta trail in Alice Springs, in May 2024.

For most of us running is new and not an easy task!

This is a mental, physical and emotional challenge for us all. Training starts now!

If our little Stella Rae can show the resilience and determination that she does daily and her parents can do the same, then we will push ourselves to do something way out of our reach. We will work hard over the next 6 months to reach the finish line for Stella and her parents!

We would be very grateful if you could please donate to this beautiful family, hopefully helping to ease some of the pressures in their lives, whilst they continue to battle through this journey with Stella.

Please feel free to follow Stella and her family's journey on Instagram:

https://www.instagram.com/stellaraeofsunshine/?utm_source=ig_web_button_share_sheet&igshid=OGQ5ZDc2ODk2ZA==

#1in25

#epilepsyawarenessmonth

#geneticepilepsy

#epilepsywarriors

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#walkforepilepsy #epilepsyfoundationaus #teamstella #xlid98foundation #nexmifawareness #nexmifencephalopathy