Jonah’s GLUT1 Journey

Jonah’s GLUT1 Journey Jonah was diagnosed at 2 1/2 with a rare genetic mutation: Glut1 deficiency syndrome.

It is an autosomal dominant genetic metabolic disorder associated with a deficiency of GLUT1, the protein that transports glucose across the blood brain barrier.

We were able to get Jonah to church today! So often, it’s hard to get him out the door because he’s not feeling well or ...
08/30/2026

We were able to get Jonah to church today! So often, it’s hard to get him out the door because he’s not feeling well or fearful of too much social stimulation. We are thankful to our church for being so understanding! They even have a sensory kit ready for kids like Jonah. ❤️❤️

08/23/2026

Update on Jonah and daily GJ tube formula routine

Jonah absolutely loves Halloween. Anything scary or creepy makes him laugh. He spent the evening laughing at all the dec...
11/02/2025

Jonah absolutely loves Halloween. Anything scary or creepy makes him laugh. He spent the evening laughing at all the decorations and living his best life. He is absolutely mesmerized by giant spiders and we were able to capture a photo of it 😍

10/26/2025

He refused to go to Church today but it blesses my heart that at least he likes dancing to worship music.

10/21/2025

Well insurance will not cover a stroller or wheelchair because it is for use outside the home. This makes me so angry for Jonah. We will have to find a used one for him. Pray we are able to find what we need for a decent price.

Jonah has been so brave through all his recent testing. We will hopefully get some answers in the next week. We took him...
10/19/2025

Jonah has been so brave through all his recent testing. We will hopefully get some answers in the next week. We took him to Boo at the Zoo yesterday and we were so proud of how well he did. He was friendly and participated even though there were so many people. We had so much fun. But then when the big kids were feeding the loud birds he had an absence seizure. I was all alone when it happened. It is so scary to watch your child have a seizure. He was fine after it and back to playing. My mommy heart broke. It occurred to me how strange our life is. Our kid has a seizure and we keep playing at the zoo. The average person would have left or called an ambulance. Having a medical child is a wild experience.

Insurance has denied Jonah’s adaptable stroller. This happens often. We’re tired of constantly fighting for the things J...
10/11/2025

Insurance has denied Jonah’s adaptable stroller. This happens often. We’re tired of constantly fighting for the things Jonah needs. Now to make many phone calls to get this fixed. Pray we can get this stroller approved quickly.

Haven’t posted in awhile. Dealing with Jonah’s severe Autism on top of everything else with him has been a lot. He just ...
10/09/2025

Haven’t posted in awhile. Dealing with Jonah’s severe Autism on top of everything else with him has been a lot. He just started ABA and that is a huge blessing. He had a sleep study last night and will have a 12 hour EEG next week. His sleep disturbances have worsened again so we are getting to the bottom of what is causing it.

Last week we had an hour long conversation with his Neurologist. He is being diagnosed with level 3 severe Autism. While...
06/15/2025

Last week we had an hour long conversation with his Neurologist. He is being diagnosed with level 3 severe Autism. While this isn’t a surprise it is still incredibly hard to hear. Many kids with Glut1 are also Autistic. He spent his first 2 1/2 years with a starving brain. It’s hard it’s all hard. Autism is hard. Watching your child struggle everyday breaks my heart. While he looks adorable and sweet, he can be extremely aggressive. Pray for us as we learn to support him and cope as a family.

Haven’t updated in awhile mostly because everything just feels overwhelming. Jonah now has an Autism diagnosis which isn...
05/25/2025

Haven’t updated in awhile mostly because everything just feels overwhelming. Jonah now has an Autism diagnosis which isn’t surprising because it goes along with Glut1. It has been hard on our family to deal with. He hasn’t been sleeping much in the past week. The weight of it all just feels so heavy. We are in a constant state of exhaustion. The older kids having been showing him such compassion when he is struggling and that is a beautiful thing. These kids are often the target of his aggression but are learning to respond in love to calm him. This is hard but God is carrying us through.

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3580 S Park Ave
Titusville, FL
32780

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