Sky Society

Sky Society Sky is a brave teen fighting unexplained seizures since age 6. We share her journey while advocating for better..together we’re louder 💜

In October 2016, Sky started having tongue and facial twitching…and even had an unresponsive episode within a few days. It was later found that she was having seizures and was diagnosed with “Tuberous Sclerosis” at the time. Prescribed medication seemed to help control her seizures through most of November. Yet, Sky's symptoms returned and grew more severe with 10+ episodes daily. December 7th 201

6, Sky was hospitalized for 7 days at OHSU Doernbecher Children’s Hospital in Portland, Oregon undergoing several tests (MRI, EEG, EKG, PET scan, ultrasounds on her heart and kidneys, genetic testing, and several medication changes). Results on the EKG showed that Sky had developed a minor form of “Dilated Cardiomyopathy''. She was prescribed heart medication to hopefully heal her heart condition. After being examined by the epilepsy specialist and reviewing the MRI, results showed Skylynn's brain had an abnormal growth; causing her seizures. Maintaining a low carbohydrate diet, Modified Atkins Diet for Epilepsy, was recommended by the neurology team to help Sky's body produce ketones instead of carbohydrates, in hopes that it would help reduce her seizures. Sky had surgery January 3rd 2017 to remove the abnormal growth, which was an 8 hour process. Sky was able to go home a couple days after surgery, but was admitted to the local hospital because she wasn't eating or drinking anything the week following surgery. Eating and drinking again, Skylynn returned home to continue healing. Post-Op, Skylynn had left sided weakness in her limbs; because of this weakness, she began physical therapy once a week in March. After only 3 sessions with PT, Sky was no longer "eligible" because of her progress (though she was still unable to write or throw a ball with her left hand at this time). With therapy no longer available, we had to take it upon ourselves to help our daughter's physical needs, to the best of our ability. She was improving well, even faster than most of us expected until Mid-April, when her seizures returned. She started having more weakness in her left arm and leg…and her leg started giving out on her at times. Towards the beginning of May, Sky had twitching in her left arm and leg…which made it difficult for her to walk. Then on May 31st 2017, she went in for another EEG, which showed seizure activity happening again. At that time, they confirmed that it wasn’t “Tuberous Sclerosis”.
**More updates are posted on this page** THANK YOU ALL FOR YOUR CONTINUED LOVE AND SUPPORT!

One day left ⏰Thank you to everyone who continues supporting our fight for Skylynn 💜
30/05/2026

One day left ⏰
Thank you to everyone who continues supporting our fight for Skylynn 💜



28/05/2026

A lot of you had questions about Skylynn’s RNS implant in our last post. We hope this answers them 💜

The most challenging aspect of Skylynn’s condition is the constant, delicate balancing act between controlling her seizures and preventing the steady decline in her physical function.
Seizure control must remain our top priority—without it, nothing else matters. At the same time, we cannot allow her body to become permanently immobile or disfigured, which would rob her of any chance at meaningful function and quality of life in the future.
This is why we’ve grown increasingly frustrated with her medical team. We need her specialists to truly work together as a coordinated team and create a unified care plan focused on Sky’s best interests. Instead, we find ourselves constantly having to push and advocate just to get everyone on the same page.
The financial strain of providing the care she needs is already heavy enough. Having to fight for basic coordination between her doctors makes this battle even more exhausting.



28/05/2026

Sky’s journey 💜

The appointment with the new orthopedic specialist went really well! He ordered CT scans, X-rays, and a gait analysis, a...
27/05/2026

The appointment with the new orthopedic specialist went really well! He ordered CT scans, X-rays, and a gait analysis, and we were able to get the CT scans and X-rays completed today. We’re so impressed by how quickly he’s moving things forward. Once he reviews all the results, he’ll sit down with us to discuss the best options to help Skylynn moving forward.



Tomorrow we head back to Houston to see a new orthopedic specialist. We’re seeking their opinion on what went wrong afte...
25/05/2026

Tomorrow we head back to Houston to see a new orthopedic specialist. We’re seeking their opinion on what went wrong after Sky’s lower back spinal fusion surgery and what our options are moving forward.
After the surgery, she wasn’t prescribed any physical therapy at all. We had to push hard just to get her 45 minutes once a week — which her own physical therapist has said is far from enough. Because of the lack of proper rehab, her body has shifted, making it increasingly difficult and painful for her to move.
We’re praying this new specialist will finally recommend the intensive therapy she needs to correct what previous doctors failed to address.



Psalm 118:24 ♡ This is the day the Lord has made; let us rejoice and be glad in it
24/05/2026

Psalm 118:24 ♡ This is the day the Lord has made; let us rejoice and be glad in it

A huge thank you to everyone who’s ordered a shirt, shared our page, or helped spread the word. Your support means the w...
19/05/2026

A huge thank you to everyone who’s ordered a shirt, shared our page, or helped spread the word. Your support means the world to us. 💜

18/05/2026

Monday morning physical therapy 💪🏼

Sunday Praise 🙌 No matter what this past week looked like, today is a chance to rest, reset, and thank God for bringing...
17/05/2026

Sunday Praise 🙌

No matter what this past week looked like, today is a chance to rest, reset, and thank God for bringing us through it all. 💜

Have a beautiful Sunday!

10 years and still fighting….Every MRI, ER visit, medication adjustment, surgery and specialist appointment adds up quic...
16/05/2026

10 years and still fighting….

Every MRI, ER visit, medication adjustment, surgery and specialist appointment adds up quickly.

Skylynn continues fighting epilepsy every single day, and we are trying to help ease some of the medical expenses caused by ongoing complications.

We created these “Her Fight Is My Fight” shirts because epilepsy affects the entire family — and because we believe awareness matters.

Our original goal was 50 shirts. So far we’ve sold 2.

If you can’t purchase one, even sharing or commenting on this post could help us reach someone who can.

We appreciate everyone supporting Sky with your comments, likes and shares. We see you and thank you so very much 💜🙏

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