Hunter’s Hive: FOXG1 Syndrome Awareness

My sweet nephew, Hunter, was born in July 2022. He has a VERY rare genetic syndrome called FOXG1 Syndrome. FOXG1 is a rare neuro-developmental disorder caused by a mutation of the FOXG1 gene, which impacts brain development and function.

This results in having a cocktail of developmental delays. These are things Hunter has (others with FOXG1 may have these or other symptoms):

-Microcephaly (smaller head/brain)
-Feeding difficulties (aspiration, fed by a g-tube)
-developmental delay (he’s 14 months but has developmental milestones more like a 0-3 month old)
-difficulty controlling his movements, mixed low muscle tone in his trunk and high muscle tone in his limbs that gives him a diagnosis of cerebral palsy
-cortical vision impairment - he is legally blind because, while his eyes can see, his brain has difficulty processing images. He can see bright lights and very close up objects
-epilepsy
- agenesis of the corpus callosum: he is missing the 200 million neuron bridge between hemispheres of the brain which makes vision and coordination extremely difficult
- increased susceptibility to illness
-difficulty regulating his body temperature
-inconsolable crying
-difficulty sleeping

Because of all of this, he spends much of his time doing therapies and other interventions both at home and in various offices. It’s important to take advantage of the neuroplacticity in his young brain to try to give him the best start possible.

His therapies are:
Traditional physical therapy
Occupational therapy
Feeding therapy
Speech therapy
Vision therapy
Craniosacral therapy
Chiropractic adjustment
Myofascial release
Gyrostim
Dynamic Movement Intervention
He is on medication for seizures

He sees a:
-developmental pediatrician
-ophthalmologist
-neurologist
-geneticist
-endocrinologist
-general surgeon
-plastic surgeon
-neurosurgeon
-Physical Medicine & rehabilitation

Despite all of this, he is a very happy boy. He loves all things nature! Being outside, looking up at the sky (one of the first things he could see) and the trees. He loves the sound of water and crickets and the feel of grass. He was made to be outside. He loves movement. Spinning, bouncy stroller rides and big sways. He likes to stand rather than lie down. He likes to follow sound to its source, a familiar voice is calming to him. He wants to see your face when you talk to him, it just takes a minute to find you. He likes water - the beach, bath, and shower. He opened his clenched up fists for the first time to feel water. He likes to smile and giggle and scrunch up his shoulders when he’s being tickled. He likes to be involved.

He does NOT like sudden loud noise or prolonged noisy environment. His hearing is very sensitive and he becomes overwhelmed. He doesn’t like the taste or texture of most foods. He doesn’t like the feel of some textures. Part of sensory processing disorder is that he can’t handle some sensations or sensory input. Sometimes even being held doesn’t feel good to him.

I am using my platform to help spread awareness of FOXG1 syndrome. It is so rare that most people have never heard of it. You can learn more about FOXG1 syndrome here.

I also want to take this opportunity to attach my sister’s venmo where she is accepting donations to help cover Hunter’s extensive medical bills. If you have even a few dollars to help support him on his journey, you can donate here.

“I wouldn’t change you for the world, but I would change the world for you.”