A Pendle couple is championing the charity which supported them through their unborn son's diagnosis of Down's Syndrome.
John and Caroline Hargadon are hosting a “mini festival” in aid of the Down’s Syndrome Association at their pub, the Duke Of Lancaster, Colne, following baby Brody’s diagnosis.
The condition is caused by an extra copy of chromosome 21 in the body’s cells, resulting in poor eyesight, a learning disability, certain physical characteristics and a vulnerability to heart defects and hearing impairment.
“Caroline had a blood test and it came back with a one in five chance of Brody having Down’s Syndrome,” said John (27).
“So we took an amniocentesis test, as we wanted to know for sure, and after a two-day wait it confirmed the extra chromosome, meaning it’s 99.9% likely he’ll have the condition.
“We felt mixed emotions when we got the diagnosis: we were upset and it took some time to get our heads around it. It’s still a shock.
“But it doesn’t change how we feel about Brody – he’s still our little boy and he will be loved just like our other children.”
The DSA is an online community providing support groups and information for new parents, people living with the condition, and their families.
“Because it helped us come to terms with the diagnosis, we want to give something back,” John said.
“The hospital didn’t give us much information: we were just pointed in the direction of the DSA and had to find out about the condition on our own.
“To be honest, I didn’t know much about it.
“I’ve met people with disabilities but I’ve never actually seen anyone with Down’s Syndrome so we were in the dark.
“And since we have six kids already, it’s like being parents again for the first time.
“But the DSA is a community and we’ve had people from Australia to Trawden give us real-life guidance, which hasn’t come straight from a textbook and is nice because they’ve walked in our shoes. They’ve been more supportive than the hospital and many are based locally so we even meet up every now and then.”
The couple still have their worries for around half of people with Down’s Syndrome also have heart defects.
“I feel more confident now thanks to the support groups but it’s still scary to go into the unknown,” said John.
“We had a fetal echo scan to test for heart problems in Brody, which came back clear but we’ll only know for sure once he’s here on June 18th.
“That’s the only worry we’ve got right now, as we’ll learn about delays in his development once he’s born.”
But John knows no matter the outcome the couple can turn to the DSA.
It’s why he’s keen to see the charity go from strength to strength and has set a £1,500 fundraising target.
Helping him start his mission on the right note, bands like Space Bats, Little Victories and The Switch will play from noon to midnight at the festival on Saturday, April 21st.
There will be also be a performance by Stevie D Dance and Acrobatics plus two raffles, one with 40 prizes, the other offering a hotel and spa package, and suggested £3 donations will be accepted.
“We’d like to thank everyone for all their help so far,” John added.
“And we’d tell any parent who’s in the same boat as us to reach out for support. Don’t bottle up your feelings – instead speak to someone in a support group because they’re always happy to help.”
For more information call John on 01282 859291, to make a donation please visit justgiving.com/fundraising/john-hargadon or to contact a support group see www.downs-syndrome.org.uk