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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!

08/06/2026

Yesterday, Skylynn had a gait and motion analysis along with X-rays of her legs, hips, and knees. These tests will help her orthopedic specialist determine the best course of action to improve her mobility, reduce her pain, and give her the best possible outcome moving forward.

While her upcoming brain surgery remains our first priority and is always at the forefront of our minds, these appointments and evaluations are also an important part of her journey. Every test and every specialist plays a role in helping give Skylynn the best quality of life possible for her future.

Thank you all for your continued prayers, encouragement, and support. We are so grateful to have such an amazing community standing beside us every step of the way. 💜

07/25/2026

💜Yesterday’s appointment went well 💜

Skylynn had her cast removed, X-rays taken, and was fitted with a new brace.

She also got her lab work done since her Epidiolex dose was increased on July 16.

Her next follow-up appointment is scheduled for August 21st.

Thank you all for continuing to pray for Skylynn and follow along on her journey. We appreciate every bit of love and support. 💜

07/23/2026

Skylynn’s Neurology Update

On July 21, Skylynn’s case was presented to a multidisciplinary Epilepsy Surgery Conference, where a team of epilepsy specialists carefully reviewed all of her recent testing, including her MRI, EEG, MEG, neuropsychological evaluation, and her overall history.

After reviewing everything, the team unanimously recommended completing her right hemispherotomy (hemispheric disconnection). They determined that her previous surgery did not achieve a complete disconnection, which may be contributing to her continued seizures.

The hope is that completing this surgery will:
💜 Provide better seizure control.
💜 Allow her brain the opportunity to make developmental progress again.
💜 Potentially reduce the need for some of the medications that affect her cognitive abilities and daily functioning.

If seizures continue after surgery, the next step would likely be a stereo-EEG evaluation to pinpoint seizure onset, followed by implantation of an RNS (Responsive Neurostimulation) device, which remains the preferred option for our family if additional treatment is needed.

The surgery will be performed by Dr. Howard L. Weiner, Chief of Neurosurgery at Texas Children’s Hospital and an internationally recognized expert in pediatric epilepsy surgery. We are grateful that Skylynn is in such experienced hands. We also have an appointment with Dr. Weiner on 8/11 to discuss the completion surgery in more detail.

As always, we appreciate every prayer, message, and word of encouragement. This journey has been long, but we continue to trust God through each step. Please pray that Skylynn remains seizure-free while we prepare for surgery, that the surgery is successful, and that it brings her the seizure control and improved quality of life we have been praying for.

Thank you all for walking this journey with us. 💜

07/13/2026

Happy Monday! ☀️ Back at PT today after three weeks off recovering from wrist surgery!

07/08/2026

We have been asked this question a lot.

Q: Why is Skylynn physically disabled? I know people with epilepsy, and aside from seizures, they’re otherwise okay.

A: Skylynn was born a healthy little girl and remained that way until October 2016, when she had her first seizure at school at just 6 years old.

Doctors tried countless medications, specialized diets, and every treatment available, but nothing was able to stop her seizures. Her first brain surgery involved removing an abnormal growth. For a while, it worked, and we were so hopeful. Unfortunately, her seizures eventually returned.

After exhausting every other option, she underwent a second brain surgery. This surgery involved removing and disconnecting portions of the right side of her brain. It stopped her seizures—but it came at an enormous cost. Skylynn was left with permanent paralysis on the left side of her body.

When one side of the body is unable to function normally, it can’t properly support itself. Over time, that weakness has caused other complications. The muscles on her left side cannot adequately support her neck, spine, hip, wrist, and other joints, leading to deformities, surgeries, braces, casts, ongoing therapies, and chronic pain.

And sadly, despite everything she has endured, her seizures have returned.

It’s hard not to wonder why a child has to pay such a high price just to have a chance at living a normal life. It doesn’t seem fair.

The reality is that without that second surgery, doctors believe the relentless seizures would have caused severe brain damage, and there’s a very real possibility she would not be with us today. The surgery gave us precious seizure-free years and protected her brain, even though it permanently changed her body.

Today, we continue to fight alongside her. Her medical care is extensive, emotionally exhausting, and incredibly expensive. Some days it feels like every step forward is followed by five steps back, but we refuse to give up.

Our greatest hope now is that the RNS implant will finally bring lasting seizure control so Skylynn can enjoy the life she deserves. We also pray that her incredible team of specialists can continue helping her regain as much function as possible and give her a future with less pain, more independence, and endless opportunities to smile.

Thank you to everyone who continues to pray for Skylynn, encourage our family, and walk this journey with us. Your support means more than words can express

06/30/2026

Skylynn’s follow-up appointment in Houston this morning went very well. Her cast was removed, and the doctors are pleased with how well she is healing. She was fitted with a brand-new, fashionable cast, and we’ll return in about three weeks for another evaluation. At that appointment, the doctor will decide whether Skylynn needs a third cast or can transition to wearing a brace.

Thank you for continuing to keep Skylynn in your thoughts and prayers as she progresses through her recovery. 💜

06/19/2026

Skylynn’s surgery yesterday lasted about four hours. While the original plan was to operate on both her wrist and arm, the surgical team decided to focus on her wrist at this time.

We’re happy to share that she is now home, recovering well, and sporting a beautiful purple cast. 💜

Thank you all for your prayers, encouragement, and support throughout this journey. Your kindness means so much to our family, and we are grateful for every thought and prayer sent Skylynn’s way.

06/15/2026

Skylynn at physical therapy this morning 💜

06/13/2026

Updates on Skylynn

June
On June 18th, Skylynn will undergo arm and wrist surgery. The procedure will permanently straighten her wrist and lengthen the tendons in her arm so it is no longer locked in a bent position. The expectation is that she will spend one night in the hospital before returning home. Following surgery, occupational therapy will be an ongoing part of her care.

July
On July 21st, her neurologist is scheduled to present Skylynn’s case to a team of specialists for consideration and approval of an RNS (Responsive Neurostimulation) implant. This is a step we have been hoping and praying will move her closer to better seizure control.

August
A gait analysis is scheduled for August 5th. This will be the final test before meeting again with her orthopedic specialist to discuss options for addressing her declining physical condition and mobility challenges.

Throughout all of this, we continue to navigate the ongoing reality of Skylynn’s epilepsy. Based on recent patterns, we fully expect her seizure activity to escalate again, potentially leading to another emergency room visit like the one we experienced on Mother’s Day.

We won’t pretend this journey isn’t frustrating. Watching Skylynn wait months for appointments, evaluations, approvals, and treatments while her condition continues to impact her daily life is incredibly difficult. We know these processes take time, but it’s hard not to wish help could come sooner for a young lady who has already endured so much.

Thank you to everyone who continues to keep Skylynn in your thoughts, prayers, and support. Every bit of encouragement means more than words can express. 💜

06/12/2026

Highlight reel
Thank you to all our followers 💜 We appreciate you !

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