Freya Jo: Bringer of Joy

Freya Jo: Bringer of Joy Documenting Freya’s journey with a rare genetic mutation and multiple diagnoses including Dysautonomia and Paroxysmal Nonkinesigenic Dyskinesia.

To donate directly for Freya’s service dog via Venmo, -McQueeney

I haven’t updated in awhile, so I thought it was time! Scout is doing very well settling in! He is a very calm, patient,...
03/22/2022

I haven’t updated in awhile, so I thought it was time! Scout is doing very well settling in! He is a very calm, patient, sweet boy and our whole family adores him. We have been working on obedience, manners, socialization, and we are starting to work on public access. We will keep the focus on those things until around a year when he starts task training. Our biggest focus eight now aside from socialization is facilitating his bond with Freya. Her age and the nature of her struggles (the reasons why we want a service dog for her to start with) also make this piece difficult, so it’s a lot of work to make sure all of these pieces fall together.

Today Freya had a tantrum which escalated into an episode of dysregulation and Scout was able to help support her through this by providing gentle paws only DPT, tactile stimulation, and just general support to help her regulate. Keep in mind that Freya’s dysregulation has a medical component due to her dysautonomia, and then of course the behavioral component, and it can be really intense. She is self injurious, sometimes violent, and it can be next to impossible to calm her down. Scout was instrumental today in getting her heart rate down and getting her into a safer space.

The work on our end is INTENSE but we have awesome support from his breeder and we are bringing in a local trainer soon to assist as well. Today I saw the benefits in action and it was amazing. Thank you for everyone who has supported us and contributed to our fund. Please feel free to continue to share and donate, as training is not cheap by any means. Tomorrow we are going out of town and will be putting him in a Service Dog In Training vest for the first time. I’m nervous but excited!

Hi friends! We are home from our trip up north to meet Scout! He will come home in February. I am still trying to raise ...
12/20/2021

Hi friends! We are home from our trip up north to meet Scout! He will come home in February. I am still trying to raise funds, so please share/donate! I’d also like to gauge interest in shirts - would anyone be interested in buying shirts or hoodies if we sold them?

Here is the GoFundMe but please feel free to send via Venmo. Everything donated goes into our puppy fund which hopefully will continue to grow because training is expensive! https://www.gofundme.com/f/get-freya-jo-a-service-dog?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

Hello! My name is Darcy and I’m Freya’s mama. Freya has a very long story despite being on… Darcy McQueeney needs your support for Get Freya Jo a Service Dog

Please welcome Scout to the family! He is the absolute sweetest and calmest pup and was our breeder’s first choice for s...
12/18/2021

Please welcome Scout to the family! He is the absolute sweetest and calmest pup and was our breeder’s first choice for service work. Freya’s new best bud comes home in February.

12/14/2021

Hello! My name is Darcy and I’m Freya’s mama. Freya has a very long story despite being on… Darcy McQueeney needs your support for Get Freya Jo a Service Dog

We get to meet/pick our puppy in 6 days! We are so excited! Please share/donate! https://gofund.me/c914abdc
12/13/2021

We get to meet/pick our puppy in 6 days! We are so excited! Please share/donate! https://gofund.me/c914abdc

Hello! My name is Darcy and I’m Freya’s mama. Freya has a very long story despite being on… Darcy McQueeney needs your support for Get Freya Jo a Service Dog

We need to raise quite a bit more money to hit our goal. Please share and donate if you are able. Thank you so much to t...
12/05/2021

We need to raise quite a bit more money to hit our goal. Please share and donate if you are able. Thank you so much to those who have already donated!!!
https://gofund.me/c914abdc

Hello! My name is Darcy and I’m Freya’s mama. Freya has a very long story despite being on… Darcy McQueeney needs your support for Get Freya Jo a Service Dog

Puppy update! We will go to meet them Dec 18. We are trusting that the breeder will help us select the perfect temperame...
11/23/2021

Puppy update! We will go to meet them Dec 18. We are trusting that the breeder will help us select the perfect temperament for Freya’s needs. Please feel free to donate to our cause! You can do so via Venmo (-McQueeney) or her GoFundMe.

Freya’s puppy was born last night! This puppy is going to be a game changer. We appreciate all donations as they go towa...
11/09/2021

Freya’s puppy was born last night! This puppy is going to be a game changer. We appreciate all donations as they go towards the cost of the puppy and its training, which will be extensive. https://www.gofundme.com/f/get-freya-jo-a-service-dog?utm_campaign=p_lico+share-sheet+spider1c&utm_medium=copy_link&utm_source=customer

Hello! My name is Darcy and I’m Freya’s mama. Freya has a very long story despite being on… Darcy McQueeney needs your support for Get Freya Jo a Service Dog

When your baby is having an off day and needs lots of cuddles. She didn’t get enough sleep and horse therapy wore her ou...
10/31/2021

When your baby is having an off day and needs lots of cuddles. She didn’t get enough sleep and horse therapy wore her out today. On a day like this we need to watch for shaking, loss of tone, trouble with coordination, and erratic behavior. Plus side is lots of snuggles!

10/29/2021

We got an email today to enroll Freya in a Moderna vaccine study. The upcoming Pfizer vaccine approval will not include children her age but doing the Moderna study gives us a chance to get her vaccinated much sooner. This could mean so much for us and getting back to a more normal life.

That little cold knocked her back so far and we are still dealing with the hit her lungs took and the even bigger hit that her brain took. Her episodes have been nasty lately and I’m just so sick of watching her effectively shake and “seize” without being able to help her. I don’t want to know what COVID would do. Still, a vaccine study makes me a little nervous so we will get sign off from her ped before we do the trial and make sure we’re prepared for any possible side effects. If any of my friends have done the trials, please let me know your experiences!

10/27/2021
Freya’s grandma (my mom) took her to the pumpkin patch last night while she was having her very first night away from mo...
10/24/2021

Freya’s grandma (my mom) took her to the pumpkin patch last night while she was having her very first night away from mommy and daddy - ever! She had a blast! It’s really nice to have family both able and willing to learn how to care for her and who can manage her episodes. Best grandma in the world!

I wanted to share an update since we saw one of her neurologists last week. Over the last couple of weeks since she was sick, she has had an increase in episodes, lower tone, and lower oxygen saturations. This is all mostly neurological - muscle tone causes her lungs and airway to need to work harder, plus she has chronic lung disease so her lungs have less reserve to start with and on top of that she’s having tons of central apneas during sleep. The doctor said that illness can exacerbate neurological diseases and that’s why her episodes have gotten so much worse. We did increase her clonazepam to three times a day and so far I’m not seeing big changes. She has 1-5 a day right now. I know you guys are sick of hearing me talk about a service dog but gosh every time she has one I think about how much it might help.

Anyway, that’s where we are right now. Back on overnight oxygen most nights, lots more temp checks, managing her safety and comfort while she goes through the scary loss of control over her own body. I love her so much and she’s so happy. Sometimes there are moments where I think gosh, right now you’d never even know. And then there are other moments when it feels overwhelming, like today when she’s “off” and we are watching her like hawks trying to keep her safe and happy. Thanks for loving her and supporting us!

Freya is very bonded to Rumi, our kitty. She seeks him out and as you can see, he seeks her out. We saw an improvement i...
10/17/2021

Freya is very bonded to Rumi, our kitty. She seeks him out and as you can see, he seeks her out. We saw an improvement in Freya’s episodes when she started her new medication, but they’ve reared their ugly head again (they told us this might happen, PNKD is not always easily controlled) and I’m just counting down the days to having a service dog as another tool to help her. We are working with a breeder up north who breeds and trains service dogs and should have a puppy coming in February. From there we will be working with her and a local trainer to train him to alert and provide support. If you would like to donate, please do so via Venmo or our GoFundMe. https://gofund.me/c914abdc

Update on this sweet girl for her fans - she is hanging in there! She’s pretty croupy so we’re doing nebs around the clo...
10/14/2021

Update on this sweet girl for her fans - she is hanging in there! She’s pretty croupy so we’re doing nebs around the clock. I hate her being sick 😭

Freya Jo I love you so. Baby girl has a cold so we’re back on our round the clock neb game. Colds hit her so hard and it...
10/09/2021

Freya Jo I love you so. Baby girl has a cold so we’re back on our round the clock neb game. Colds hit her so hard and it’s been so long, I’ve definitely got some anxiety.

On Friday night Freya went to my school’s football game. (If you don’t know, I teach high school English.) She had a bla...
09/26/2021

On Friday night Freya went to my school’s football game. (If you don’t know, I teach high school English.) She had a blast - ran around for hours with her sister and a friend’s daughter, and did really well (no episodes!) Her dad and I knew that she would pay for it this weekend and sure enough, she’s had low muscle tone, poor regulation, a raspy inflamed airway, and tons of fatigue all weekend. She barely made it through horse therapy with both sidewalkers helping hold her up. One key aspect of having the type of disability she has is she “looks normal” and because she isn’t totally immobile her struggles are discounted. I can see tons of ways that a service dog would help so much this weekend and we can’t wait to bring home her pup in the spring. We are going to be hitting hard with the GFM, tshirt sales, and whatever else we can think of. We are so grateful for the shares and donations - thank you!!! https://gofund.me/c914abdc

Back in the saddle! Both girls do horse therapy and now that it’s cooled off they are back in session! Freya loves her h...
09/25/2021

Back in the saddle! Both girls do horse therapy and now that it’s cooled off they are back in session! Freya loves her horse, Danika. She has always been drawn to animals.

Throwback Thursday 💕
09/23/2021

Throwback Thursday 💕

09/21/2021
09/19/2021

This is what she goes through on a daily basis. She is strong, but she deserves support. A service dog could be life changing. Please either give or share.

https://gofund.me/c914abdc

09/19/2021
If you are new here, this is Freya. Freya is three years old. One day I’ll type out all of the details but Freya was bor...
09/19/2021

If you are new here, this is Freya. Freya is three years old. One day I’ll type out all of the details but Freya was born April 10 2018 and struggled with feeding from birth. She was ultimately diagnosed with laryngomalacia, hypotonia, Dysautonomia, chronic lung disease, and severe sleep apnea within her first six months. Eventually she would complete genetic testing that would show she has a very rare (only person in the world) genetic mutation (ZNF652) that we believe to be the source of her struggles. She has been on supplemental nocturnal oxygen since she was five months old, and had a gtube placed just before she turned two. In July 2021 after over a year of unexplained abnormal movements Freya was diagnosed with Paroxysmal Nonkinesigenic Dyskinesia which causes seizure like episodes. Freya has a whole lotta struggles but let me just tell you how she lets absolutely NOTHING get in her way. She is the most resilient little girl and she just exudes joy. She lights up every room she’s in and has since she was an infant. I plan to use this page to keep her followers updated on her journey, document her journey, potentially help others with kids who may be similar, and connect with other families. We are in the beginning stages of fundraising for a service dog for Freya and we will update that journey here, as well.

09/19/2021
09/19/2021

After three years I think it’s time to have an official page to keep Freya’s people updated on her journey. ❤️

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Lake Hughes, CA

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