Redbank Plains mum Shelley McRae.
Redbank Plains mum Shelley McRae. David Nielsen

'I didn't know': What happened when mum passed on gene

WHEN mum Shelley McRae fell pregnant, she had no idea her children would inherit a gene causing them to have intellectual disabilities.

All three of Shelley's children are affected.

Her youngest son Bryn, 8, is non-verbal, has limited vision and is fed every two hours through a tube.

Rohan, 11, is home schooled but attends a facility in Sunnybank one day a week.

Shelley's children inherited Fragile X, the most common known single-gene cause of autism and leading inherited cause of intellectual disability.

Every week in Australia one child is born who is fully affected and 20 children are born who are carriers of Fragile X.

There is no cure. For the Redbank Plains family, every day life can be a challenge and Shelley is just one mother, who supports raising awareness about the gene that has had such an impact on her life.

This Sunday, the Story Bridge in Brisbane will light up orange at sunset, as part of an effort to make the general population more aware of Fragile X.

Redbank Plains boy Rohan, 11, has both Fragile X and autism and is severely intellectually impaired.
Redbank Plains boy Rohan, 11, has both Fragile X and autism and is severely intellectually impaired.

Shelley said the National Disability Insurance Scheme (NDIS) had given her some relief in managing three children with disabilities as a single mother, especially with her "angel" Bryn.

"He's blonde with blue eyes and he just glows. He's the happiest, cuddliest little boy and he's just this little angel that fell down to earth and wanders around my house," Shelley said.

"Before Bryn and his older brother Rohan entered the NDIS last year, we only received three hours a week of carer support which left me at breaking point."

Redbank Plains boy Bryn, 8, and his brother Rohan both inherited the Fragile X gene.
Redbank Plains boy Bryn, 8, and his brother Rohan both inherited the Fragile X gene.

"Last year nearly killed us all. There was too much for one person to cope with and really I was at the point of a complete breakdown. Physically and emotionally I was done and I could see my family breaking down."

Bryn and Rohan now receive considerably more carer support hours through the NDIS, in addition to funding for speech therapy, occupational therapy and physiotherapy.

Bryn also receives funding for feeding tubes and syringes as well as carer support for three-hourly PEG-tube feeds.

The funding has been, according to Shelley, a "God-send".

Sunday 22 July is Fragile X Awareness Day. To raise awareness of this little known genetic condition, the Story Bridge will light up orange at sunset following a family fun day at Captain Burke Park from 1pm to 5pm.



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