‘He is such a character’: Mother speaks out about her son’s rare genetic disorder
The mother of a four-year-old boy from Hailsham with a rare genetic disorder has spoken out ahead of Rare Chromosome Disorder Awareness Day this week (June 24).
Teddy Plume, of Maple Court, has a rare condition called Pettigrew syndrome which is only found in boys and causes a delay in intellectual development.
Donna Othen, Teddy’s mum, said they found out he had the condition through genetic testing.
Donna said, “He currently can’t walk or talk but he is such a character. He finds his own way to move around and is very vocal.
“He also has a feeding tube however he has really progressed and hopefully won’t need this much longer.”
She said when Teddy was diagnosed with this condition in June 2019 it was ‘really worrying and upsetting’ but the more they learn ‘the less scary it is’.
Donna said, “I know the future will be difficult but I’m not anxious anymore. I wouldn’t change my boy for the world, I just wish I could change the world for him.
“The future is unknown but hopefully he will walk and talk one day.”
Donna said she would love the family garden to become a sensory space for Teddy so has set up a funding page – https://gofund.me/1c7692fb
She said, “Being a single parent to three kids and not having much time to manage it amongst everything else,
“I would like it to be covered in bark and it would also be nice to have a sensory area for Teddy.
“I am also hoping to have a garden room to use as a dining area which is important for Teddy to be included as I am giving up half of my living room next month so it can be turned into a downstairs bedroom for Teddy.”
Run by the charity Unique, Rare Chromosome Disorder Awareness Day takes place tomorrow (Thursday, June 24) to raise awareness around rare genetic conditions.
Unique has created a world-leading database to connect families with rare conditions to break the feeling of isolation and provide hope for better care and new treatments through forming a community of mutual support.
If you are looking for support, call Unique on 01883 723356 or visit https://rarechromo.org/