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Minna Van Arsdale

@mission_minna

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Our sweet little Minna and the hope for a Rett Syndrome cure.

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Save the Date! November 5th at Scottsdale’s Western Spirit Museum. See website in bio for details.

https://reverserett.org/events/reverse-rett-phoenix-2026/

#reverserett #cureforrett #rettsyndrome #missionminna by @mission_minna

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5 months ago

ONE FULL YEAR of fighting for this piece of adaptive playground equipment has finally paid off 🙌

Just look at these faces! Our kiddos mostly sat inside for recess because our playground had no equipment for them. Yes, it was built and remodeled after the ADA act of 1978, and yes, we still had to fight to make it right. And yes, other schools in our district that were recently remodeled had all of the ADA bells and whistles added even if they didn’t have a special education program in the facility.

We are proud to have the best of the best special education program at our school, but we have some work to do on the accommodations. Unfortunately, these details go by the wayside unless parents have the bandwidth to take it on…and most of us are struggling to keep our heads above the water. But it’s amazing the changes that can happen with a little push and shove.

In addition to the playground piece, we fought to remodel the classroom bathroom to add a proper adaptive changing table, additional handicap spaces, adaptive door entry buttons and new concrete pathways. It seems crazy to have to fight for these things that are legally required, but not surprising in the least.

The work is not done. We still have a fight ahead of us to come up to par with more items, but we are thrilled with the progress we’ve made this far….and it was NOT easy. @cochiseapt @ashley0021 by @mission_minna

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6 months ago

We are so fortunate and happy to have our community of Rett families around the globe. Connecting for just an hour or so is always the most natural and fulfilling interaction. Of course, if any of us had the time, we could chat for days.

Gemma and Minna are the same age. Gemma’s brother, Luca, and Oscar are the same age. The boys met once a few years ago, and then hit it off right away on this visit like no time had passed at all. It’s amazing that even the siblings feel our unique bond as families. @rainbowsandgems #rettsyndrome #reverserett #missionminna #cureforrett by @mission_minna

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7 months ago

The sensory friendly Nutcracker was a delight! The perfect length and comfortable environment for our girls. Thank you @balletarizona for listening to our requests and making this happen for so many to finally enjoy! @ashley0021 by @mission_minna

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10 months ago

We have finally and gratefully succumbed to the G-tube for Minna. She will still eat by mouth, but we will use this as a tool to supplement more calories here and there and, most importantly, to increase her hydration. We tried every last ditch effort to increase her fluid intake and even changed out all of her meds to dissolvable tablets so she would get them down. It was a lot of stress and a lot of extra work. We are all thrilled now to have this option to make our lives easier. Minna is thrilled that she doesn’t have to take her meds by mouth anymore and she’s already feeling the benefits of the extra hydration.

The surgery went really well and we were able to go home the following day. She does not seem to have much pain and she giggles when she gets feeds and extra water. She is such a champ! Not a single complaint or fuss. She is truly amazing.

This is another transition for us, among many, but we are quickly getting the hang of it. We are grateful for all of the guidance from our Rett family friends and support of close friends and family. #rettsyndrome #cureforrett #missionminna #reverserett by @mission_minna

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10 months ago

Still coming down off the high of our amazing Reverse Rett Phoenix event last night. We had such a great turnout and so much support. We are slowly outgrowing our beloved venue, but looking forward to expanding our efforts next year and making rett history as fast as we can. #reverserettphoenix #reverserett #missionminna #cureforrett #rettsyndrome @rsrtig by @mission_minna

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a year ago

8 years old today! We can’t believe how big she is! She’s definitely nearing preteen, rolling her eyes at us and giving us more sass, but she’s still the same sweet bean who gives the best snuggles, licks everyone’s faces and stares into your soul.

I can’t believe it’s been 6 years since her diagnosis. It feels like it was just yesterday. It makes every birthday that much harder to swallow, yet that much more of a reason to celebrate. For some reason 8 feels big. It feels difficult to accept as we’ve missed so much of the little kid milestones we wish we could have had. But Minna has grown so much this year. She has regressed and worked twice as hard to build back skills. She’s learned to live and manage her body growing and changing, and her peers differing from her more and more. She is amazing beyond belief and we are so grateful for these 8 years and many more. #rettsyndrome #reverserett #cureforrett #missionminna by @mission_minna

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a year ago

Today we celebrated Rett Syndrome Awareness at Minna’s school to celebrate the month of October. We are celebrating all of the different diagnoses of the 8 kids in her class throughout the year on their respective days/months. This is the first year we’ve really pushed for awareness of our special program at her school and so far we are rocking it! All of the kids are participating in dressing up in the specified colors of the awareness day, and all have been really interested to learn more.

Today, Minna and I gave a brief, child friendly presentation about Rett to all of the 2nd grade classrooms and it was a huge hit! She communicated on her Tobii, “Hi, My name is Minna. School, recess.” When we got to the part about how cool science is and the progress toward a cure she navigated to “science.” She seriously showed the kids how she understands. I was shocked how much she was interested. And in true Minna fashion, she had enough about half way through and then said “stop, I’m done, recess, I don’t feel well.”

The second graders commented how cool it was and I truly hope it helps them to interact with her more outside of the classroom. She loves all of the attention and she adores the other kids. We are striving for more inclusion and interaction in our school with both our awareness activities and fighting for playground equipment and resources. It’s been a process, but we’re getting there.

Minna came home today giddy and smiling. She stayed awake an extra hour tonight which is a huge win. She was so happy today, and this means the world to us. Today is proof that more inclusion leads to more happiness for all. #rettsyndrome #cureforrett #missionminna #reverserett by @mission_minna

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a year ago

Today is Rett Syndrome Awareness Day, and we’re shining a light on one very special girl, Minna Van Arsdale of Arcadia. 💜

We had the privilege of featuring Minna’s story a while back in PVCL, and her light continues to inspire us. 💜

Minna has Rett Syndrome, a rare neurological disorder caused by a random gene mutation. Though she is nonverbal and faces daily challenges like seizures and mobility issues, her joy and resilience never fade. 💜

“Minna is content and always smiles,” says her mom, @ccvanarsdale. “She’s patient and kind… a reminder to pause, to breathe, and to focus on the here and now. The smallest things overpower the big.” 💜

Today, we honor Minna and her incredible family, and we join them in spreading awareness, encouraging inclusiveness, and inspiring compassion for all children and families living with disabilities. 💜

You can support them through their annual @mission_minna fundraiser, Reverse Rett Phoenix… swipe or DM for more info. 💜 by @mission_minna

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a year ago

Join us for this year’s Reverse Rett Phoenix! Cocktails, dinner, raffle and more. We have incredibly optimistic research updates. For more information visit http://www.reverserett.org/phoenix

#reverserett #rettsyndrome #missionminna #cureforrett by @mission_minna

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a year ago

New arrival! It took us 2.5 years to fight for this bed. We had to change insurance companies, submit appeals from our doctors and therapists and then wait and wait and wait. Our last travel bed popped and we woke in the morning to find it collapsed on top of Minna. Since then we’ve used broom handles held up with wire hangers or whatever we can find at an airbnb to prop it up. This bed by Abram’s Nation has a sturdy frame to make sure that doesn’t happen again. It comes with a rolling suitcase and everything fits inside with an included blow up mattress. It can also go on top of a bed and comes with a separate mattress topper that inserts into the bottom to use at home. It also has a clear top so her camera can see in. We first saw this at the Rett Conference in Nashville almost 3 years ago and it checked all our boxes. It’s such an amazing feeling when you dream of a piece of equipment that would be perfect for your child’s needs and then you find it! Thanks to the innovative family who created this 🙏. @thesafetysleeperbyabrams by @mission_minna

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2 years ago

We know there are many good causes to support on #GivingTuesday. We hope you’ll consider giving to RSRT on behalf of our daughter and all who suffer with Rett Syndrome.

RSRT’s vital work paves the way for biopharma companies to translate genetic research to clinical trials. Without RSRT we wouldn’t be where we are today on the track toward a cure.
The genetic medicine revolution is here. Cures are on the horizon. The scientists, technologies, and projects are all in place. The main thing holding us back now is a lack of funding.

Please donate or create your own fundraising page and share with your network to accelerate the discovery of cures for Rett. 94% of your donations go directly to RSRT’s research programs, aimed at speeding cures. @rsrtig
#givingtuesday #reverserett #cureforrett #missionminna

https://rettgive.org/campaigns/mission-minna/ by @mission_minna

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2 years ago