My beautiful niece Zeniah was born with a rare genetic disorder called Mowat- Wilson Syndrome, of which there are only 650 cases diagnosed globally.

I’ll be running the Heaton Park 10K in January to raise funds and awareness of Mowat-Wilson for the Mowat-Wilson Syndrome Foundation.

The last time I ran 10K was before kids 15 years ago, and I haven’t run at all in the last 2 years so this will definitely be a challenge!

What is Mowat-Wilson Syndrome?

Mowat-Wilson Syndrome is associated with cognitive impairment and with multiple health defects caused by a genetic mutation or deletion on the ZEB2 gene. Major signs of this rare genetic disorder include distinctive facial features, intellectual disability, delayed development, intestinal disorders, seizures, congenital heart disease, agenesis of the corpus callosum, male genital abnormalities (hypospadias), and major expressive language difficulty.

Most children with Mowat-Wilson Syndrome are non-verbal. Speech is absent or severely impaired. Many people with this condition can understand others’ speech and some use sign language to communicate. If speech develops, it is delayed until mid-childhood or later.

Children with Mowat-Wilson Syndrome also have delayed development of motor skills such as sitting, standing, and walking. Although many different medical issues have been associated with Mowat- Wilson Syndrome, not every individual with this condition has all of these features. Children with Mowat-Wilson Syndrome typically have friendly and happy personalities, despite their many difficulties. Children born with Mowat-Wilson Syndrome will need intense medical attention and personal care throughout their entire lives.

It is important to note that Mowat-Wilson Syndrome was discovered only recently (defined in 1998), and we are still learning about what physical, behavioral, and developmental issues are associated with the syndrome. We invite you to learn more atwww.mowat- wilson.org. 

Thanks in advance for any support, it’s most appreciated x