Genetic condition -GRIN2B Disorder and HBOT

When YM was two years old, during the uncertainty of the COVID pandemic, our lives changed significantly. For months, I had felt something wasn’t quite right. He wasn’t meeting milestones and wasn’t developing like other children his age. As a mum, you just know. I trusted that instinct and pushed for answers.

Genetic testing gave us clarity: YM was diagnosed with GRIN2B-related neurodevelopmental disorder, a rare genetic condition. GRIN2B is a gene located on the 12th chromosome and is part of a family of genes that encode receptors for chemical messengers

Genetic mutations to the GRIN2B gene change how the brain receives these messages affecting brain development. We were told there is no cure. The recommended path was supportive therapies — occupational therapy, physiotherapy, and ongoing developmental intervention. We were also warned that many children with GRIN2B develop seizures, often before the age of nine.

GRIN2B exists on a spectrum, and YM is considered on the higher end.

He struggles with:

• Fine and gross motor skills

• Understanding and processing information

• cerebal visula impariments

• Low muscle tone

• Tactile defensive

• Prefers to keep his hands firmly on the floor to feel grounded and secure. Every movement required effort.

Starting Hyperbaric Oxygen Therapy

Around the time of his diagnosis, I researched hyperbaric oxygen therapy and decided to try it.

We began attending sessions at OxyChai Therapy Centre, under the direction of Sarah Dafner.

After our first block of sessions, we saw something remarkable.

YM began commando crawling — almost “swimming” across the floor. Before that, he would lie on his stomach and stay there. That first forward movement was monumental for us.

We now complete a block of 40 sessions every six to twelve months.

Each time, we notice changes:

• He is more aware of his surroundings

• He pulls objects away if he doesn’t want them

• He swims toward his favourite toys

• He clearly knows what he wants

He has recently started kneeling — something that once felt impossible. His focus, strength, and tolerance have all improved.

YM continues with multiple therapies, and hyperbaric oxygen therapy complements everything else. We also continue because of the seizure risk associated with GRIN2B. While there is no guarantee, we believe HBOT supports his overall neurological health and reduces the risk of him YM developing seizures.

Celebrating Every Milestone

Progress for YM doesn’t happen overnight. It takes patience and commitment. I am deeply in tune with him and notice every small step forward.

When your child once couldn’t move — and now swims across the room with determination — that is priceless.

We are incredibly grateful to Sarah Dafner, whose dedication has helped so many families. The zechusim she has are immeasurable.

YM is now six years old.

He is determined. He is aware. He is growing.

And his journey continues — milestone by milestone

Very Grateful Mother

Manchester