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“My hope for 2023 is that life with allow me to stop being the strong one, so I can begin to make space for my softer side.” -Amanda Owen. #UBA5 #EIEE44 #Epilepsy #Cure

Weekends at home are my favorite. Listen to that little voice. 😊

There are many types of #seizures. Some people don't even realize they have seizures because their symptoms don't match that portrayed in movies. -- Did you realize you were having seizures at first? #EpilepsyAwareness

Exciting news! NACL is partnering with the Raiden Science Foundation to help advance the cure for UBA5 disease. Join us in making a difference and donate at raidenscience.org. The Raiden Science Foundation will also be joining us today at ConnectX. #gamingcommunity

Working hard. 💪 #Epilepsy #UBA5 #EIEE44 #Raredisease

Medically Complex Parenting Confession…Quit using this story. It’s not a good analogy and especially on days like today, I absolutely despise hearing it. #MedicallyComplex #DrugResistanrEpilepsy #LGS #UBA5 #EIEE44

Rare disease life. No matter how much we plan…this life is so unpredictable. At the snap of your fingers we must be prepared to pause all aspects of life to tend to a medical emergency. Double pneumonia, both lungs collapsed, seizure frequency ⬆️ oh & a consult to Ortho #UBA5

It’s ok to admit that having a full time career while also having a medically complex child and typical children can seem impossible. Just a reminder that you can be totally exhausted, stressed, and tired while simultaneously knowing how lucky and blessed you are. ❤️

Purple Day 2023. Proud of this girl right here! Not only did she deck out on Friday to raise #epilepsyawareness She also did morning announcements to provide Epilepsy Edu and arranged for her entire elementary building to participate in wearing purple last Friday. #UBA5 #Cure💜

Let’s make Epilepsy Barbie Happen! 👏🏼 Those in the #epilepsy community have come together offering suggestions of what “Epilepsy Barbie” & Ken should look like and accessories that should be included! Are there any other accessories you’d add? 🫶🏻 Tag MATTEL with a 💜!

Don’t blink because before you know it, your little Baby Boy will turn into a young adult.❤️

Specifically about my son’s gene mutation. This is huge. news.ohsu.edu/2023/09/13/ohs…

I never knew how much love my heart could feel. It is the kind of love that you can’t explain. We are still asking for continued prayers. Due to current circumstances I have had to take unpaid FMLA. Our family would greatly appreciate any assistance🤍 gofund.me/c303f019

Heaven gained one of the most precious boys to ever be on this earth. Yesterday morning Braxton was able to pass away peacefully in my arms. He is now up in heaven where he is no longer suffering & completely seizure free. Please continue to pray for our family at this time

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Obituary for Braxton Hill | Hufford Family Funeral Home It’s been one week and I miss you more and more each day. Life will never be the same. Three children this week have passed away from my son’s genetic condition. #UBA5 #Cure #Epilepsy huffordfh.com/obituary/Braxt…

The entire team wore purple. 💜 #Epilepsy #UBA5 #Childloss

I made the decision to return back to work this week. I just have to say that I have some pretty amazing families that I service. Going into homes and zi was greated with coffee, flowers, and even one family made me a plaque in remembrance of Braxton.🤍

Today you should be 7 years old. Instead today marks one full month with out you. I should be waking you up to a thousand kisses and celebrating. Instead, I stood in a cemetery, looking at your grave wondering how this is possible. I miss you so much that it physically hurts.❤️