Jaxon has had a rough start to his life that many of us take for granted. Mandy and Matt knew from his 20 week ultrasound that things may be a little different than your average child. The first hurdle was when they asked if Mandy and Matt wanted an abortion after their 20 week ultrasound. There was no way they were going to let that happen let alone bear the thought. Their lives haven’t been easy since that day forward.

Now we will fast forward until after birth.  Jaxon was diagnosed with Hydrocephalus. (A build-up of fluid in the cavities deep within the brain) Which is a big complication on its own. After that they noticed Jaxon couldn’t see well and was diagnosed with CVI- cortical vision impairment. Meaning his eyes and brain can’t make the right connections. They don’t know what he can and cannot see.

 On top of that complication he was diagnosed with Severe Hypotonia. At 21 months old he can’t hold his head up for very long as he does not have the muscle tone to do so. He also cannot sit, bear weight on his legs or roll over yet. They have been working very hard since birth in therapies.

 Feeding has also been very difficult and he started to drastically decline. He ended up having to have a g-tube put in. He can’t have anything by mouth or he could aspirate.

During this time he was also diagnosed with a rare genetic condition called TBCK. Here is a link to help understand http://www.tbckfoundation.com/ this is a very rare progressive disease and they were told that there were not many cases world-wide. This disease is also is associated with seizures. He had his first very big seizure back in December. Jaxon was starting to do better in January so Mandy and Matt decided to take their annual family trip to get out and enjoy life.  (Between all appointments from hospitals, doctors to therapies they don’t have much free time to spend together as a whole family.)

Jaxon has a Neurologist, Pulmonologist, Geneticist, GI Doctor, Ophthalmologist, PMR Doctor, PT Therapist, OT Therapist and a Vision Therapist.  Jaxon took a turn for the worst when they were on their way back from their family vacation to Florida. Jaxon became unresponsive while they were headed back to their vehicle after the aquarium they stopped at. He went into respiratory failure and became unresponsive. They knew they had to immediately find the nearest hospital. The hospital wasn’t equipped to handle him so they transferred him to a Children’s hospital in Atlanta, Georgia.

Jaxon is now hooked up to a ventilator. It has been extremely hard being away from home for all of them being 1100 + miles away. Matt and Grandma (Mena is what the kids call her) are going to have to go home and return to work. While Mandy stays with Jaxon until everyone can figure out a game plan to get him home.

Jaxon was also scheduled to get his g-tube replaced with a mickey button in March. It’s really hard to be in the hospital and for Matt to take off work being he is the only provider. Mandy is a stay at home mom to take care of Jaxon.

 They don't know how much time they will have with Jaxon and would appreciate any help they can get right now so Matt and Mandy can both be with him when needed.

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Organizer and beneficiary

Jessi Oby
Minneapolis, MN
Amanda Tolbers

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