Team Dallas - Our Canavan Disease Warrior, North Branch, MN (2025)

12/19/2025

This has been a very hard week for me personally, and for our family. I don't want to talk about all of it. My life is extra stressful right now and today was the icing on the cake!

Emma had another episode with her heart at school. This time it started as Afib and heart rate was 200-238 bpm for over an hour. Needless to say, she earned herself an ambulance ride to the hospital. It was very scary for all of her friends but Emma took it like a champ. She was so brave!! She even waved and smiled at the hundreds of kids pressing their faces against the school windows as she was loaded into the ambulance.

But thanks to the portable EKG monitor I bought for her to keep with her at school, and the fast EMS response, we got the answers we needed. The cardiologist saw exactly what they needed to see and are 100% certain Emma has a condition called Supraventricular Tachycardia (or SVT)

What it is: An electrical problem in the heart where upper chambers beat too fast, disrupting normal rhythm, with types including AVNRT, AVRT, atrial fibrillation/flutter.

Symptoms: Sudden pounding heart, rapid pulse, chest pain, dizziness, breathlessness, sweating, sometimes fainting (syncope).

Because of how long her episodes last and how high her heart rate gets, they are recommending that she gets a cardiac ablation. Which is a procedure where they insert a special catheter into her heart through a vein and actually create some scar tissue at the location where the extra electrical connection is causing her heart rhythm to misfire. Cutting off that electrical connection should stop the electrical misfire that is causing her SVT episodes!

Her heart rhythm returned to normal so they let us go home and we have an appointment on Monday with the Cardiologist to discuss and schedule the ablation procedure. They are also going to do an Echocardiogram.

Oh and Ryan has felt like crap the last 2 days and tested positive for COVID this morning 😫😫 So now I am worried about him too. He is plowing and salting in this crap weather and feels like absolute garbage. And of course I am stressed to the moon about the rest of us getting sick! Dallas has been fussy today and crying off and on all night but no fever so I am hoping it is just upset tummy. Emma needs to stay healthy for her heart. And I am just struggling to keep it all together 🙃😭

12/13/2025

Meanwhile... here is Dallas in his Pizza Pajamas...

Showing off his future chest hair without a care in the world 😅🍕

Merry Christmas Ladies 😎

12/13/2025

Just in case anyone wants to know how I am feeling...

Christmases like this are best for teaching your kids how to do things for others instead of for themselves. That is where TRUE happiness begins. By bringing joy to someone else.

I am just not feeling Christmas for myself this year. The only thing I wanted was denied. So how do I find someone else that will say yes? I don't.... But I will find some other family that I can make smile... that will make me feel better

12/11/2025

The board members of CIRM voted unanimously to deny funding. 💔

I am still in shock. The sadness hasn't even set in yet. I am just stunned that the funding for this research that has been SO promising, and that has been in the works for so long, was denied... We tried so hard.

I don't know what happens next.

But we are NOT giving up.

12/11/2025

Tomorrow is the most important day of my life and Dallas'!!! Funding for the research we have been working on for 3 years was denied by CIRM. Tomorrow is the appeal hearing and I was asked by the lead scientist to speak before the CIRM board, in an attempt to get them to approve the funding so we can continue. And we are SO CLOSE to being able to give Dallas a chance at a better life.

I sent a letter of approval and pinned in the comments is what I will be saying in my speech. I feel like I have I have 2-3 minutes to save Dallas' life. But there is so much that goes into this research. I really just need every that loves Dallas to pray that this is gods will for him and that CIRM will approve the funding so we can give him a chance.

I also need to add that this Is SO MUCH bigger than just Dallas. This is a possible "new" hope for ALL of Canavan Disease. And kids as old as 16 to have a chance if this reaches clinical trial. I am also incredibly thankful for what BridgeBio/ASPA and Myrtelle have been able to do for Canavan Disease through Gene Therapy.

But (without going into details) the exclusions did not give Dallas the opportunities he deserved, nor the outcome we were in search of. And looking back, I do not feel those trials were meant for Dallas.

God has a plan. I pray that this Is it....

12/09/2025

When your daddy plows snow in the winter, every minute you get to spend with him is EXTRA special!! Dallas has lots of stories to tell his dad!

12/08/2025

When you let Emma bring Dallas into her bedroom.... 🙄

12/06/2025

Hi friends!!! Just a little update on Dallas (which I SWEAR to Santa I typed and shared last night right before we left the ER... but the Grinch must have stole my post or something)

AnyWHO! Last night in the ER we did a FULL workup on Dallas. His Brain MRI, Chest Xray, shunt series Xray, viral panel, urine culture, blood culture, all the labwork, and even his little foot that has seemed hurty the last few days looked surprisingly great! I am giving full credit to all of your prayers 🙏🙏. Because both myself and the ER docs were stunned!! He had a terrible day and shortly after I shared a post asking for all of you to keep him in your thoughts and peayers... things started to turn around. He was laughing and smiling and flirting with ALL of the nurses! He even had to give a few Citations!

While in the ER, they gave him 2 different IV antibiotics just be proactive. But it did take 5 nurses, 7 sticks, and an accidental arterial line just to get an IV. He barely flinched and disnt even make a peep through it all. Such a strong and brave little boy 💖 His UA in the ER looked good, but I do still suspect he has a UTI and that his culture will grow something that we need to treat. Just based off the UA results we have been getting at home the last week, and because of his pain/discomfort and fever symptoms. We also suspect he has a virus of some sort because of how j***y he is and some of his lab results did suggest that as a possibility. And the seizure he had yesterday is very likely just a breakthrough seizure due to his underlying illness. It didn't last long and because of that, we are just going to keep an eye on it before making any changes to his epilepsy meds.

With nothing left to rule out besides his blood and urine cultures, I decided it was best to bring my boy HOME! That hospital is swarming with COVID, RSV, and Influenza so it was definitely not the safest place for him to be! So we are back home, managing his junkies and fever while we wait for UA cultures. If he needs antibiotics, they will send an order to our local pharmacy.

I am so thankful we got to come home! I can still tell he doesnt feel great. But he isn't so sick that I don't feel capable of managing it from home. And we have the tools we need. And this was my first week back to work, so I REALLY need to NOT be stuck in the hospital. On top of it all, some hacker used my debit card to make a ton of fraudulent charges on Ebay, Best Buy, and elsewhere in California on Thursday and took everything I had 🤬 My bank canceled my card and said it will take about 2 weeks to get that money back which sucks. But at least I should get it back! I am thankful I caught it when I did. And thankful I still have a source of income as Dallas' caregiver. But I REALLY hope whoever did that to me gets what they deserve...

Lastly, many of you have asked about my knee! (Thank you) My knee is doing pretty good! I am up and walking on my own! Both myself and my PT do have concerns that we need to address with the surgeon at my follow up appointment next week. But overall, the ACL they replaced it healing! I am struggling more with the meniscus they didn't operate on.

Once again, thank you all for the prayers! And we love you!

12/06/2025

Deputy Dallas is currently in the Emergency Room at Children's in MPLS.

He had a seizure today 😔

He hasn't been himself so we are doing a full workup. Something hurts and I don't know what. But we will figure it out 💪

11/29/2025

Happy 5TH BIRTHDAY to the sweetest and bravest and strongest boy in the world. My one and only son, Dallas! I love you SO BIG!

We have been through a LOT these last 5 years. Every day with you is truly a blessing my little warrior 💙

11/28/2025

Happy Thanksgiving from our family to yours!!

We had my sister, her fiance Jordan, and their 3 boys over for Thanksgiving. The food my sister and I made turned out awesome! It was so good I forgot to take pictures! 😭

Dallas REALLY enjoyed the Macy's Thanksgiving Parade this morning!! He also liked all the ruckus his sister and cousins made all day. He did cry a couple of times but overall he was a happy boy and had a great day 🩵

I am thankful every day for everything I have. Truly. As hard as life is sometimes, I do still feel blessed! But I really miss my mom this time of year. And for some reason I am missing her more the last few days. So I have kindof been in my "feels" the last few days. Holidays are not the same since she died. Family doesn't gather like they used to anymore. Everyone has just gone their separate ways. It is weird. But my sister and I still enjoyed our nice little get together. Our mom would have been so proud of how good our food turned out!

11/21/2025

Dad trying to cheer up his boy 😁

Team Dallas - Our Canavan Disease Warrior

12/19/2025

12/13/2025

12/13/2025

12/11/2025

12/11/2025

12/09/2025

12/08/2025

12/06/2025

12/06/2025

11/29/2025

11/28/2025

11/21/2025

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