BERRIDALE resident Carole Cross has worked tirelessly to raise awareness and funding for the Children’s Medical Research Institute for the 25th anniversary of Jeans for Genes Day.
Ms Cross and her family have been affected by myotonic dystrophy, a common form of adult onset muscular dystrophy.
“My son, mum, and sister have all died from the condition, which is an inherited disorder,” she said.
“My mum and sister developed symptoms during adulthood, while my son had congenital myotonic dystrophy and didn’t survive past five days old.”
Ms Cross also has myotonic dystrophy, but luckily the disorder has not been inherited by her two daughters.
During her pregnancy with her second child Jesse, Ms Cross struggled with stress and health problems.
She was very sick, and decided to visit a paediatrician seeking answers.
After looking into her medical history and reading that her mother had myotonic dystrophy, the paediatrician diagnosed the baby with the same condition.
Babies born with congenital myotonic dystrophy have poor muscle tone and severe problems with their respiratory system, struggling to breathe normally.
After the neonatal period of 28 days, babies with the condition generally begin to improve.
But sadly, Ms Cross’ son Jesse only lived to five days of age.
Since her son’s passing, Ms Cross has managed her myotonic dystrophy with preventative measures, but this hasn’t been without challenges.
More than one year ago, she suffered a heart attack, which is common among people living with the condition.
In response, Ms Cross had a stent and pacemaker inserted, and undergoes regular check-ups with specialists.
But theses check-ups don’t always provide answers or treatment options.
Ms Cross said her daily life was a struggle.
She said myotonic dystrophy had caused muscle weaknesses in her hands and legs, which caused her to trip and fall sometimes.
“Even the easiest everyday tasks can end up a battle,” she said.
The personal connection to the disorder has made Ms Cross aware of the larger scale of the cause, and how she could do her part to help.
“I suppose what attracted me most to this cause is I believe that not only do people need assistance, but study needs to be done to try and combat these conditions,” Ms Cross said.
“I have done some research and unfortunately there is no cure or treatment for myotonic dystrophy.”
The lack of cure is Ms Cross’ main motivation to help out organisations like Jeans for Genes with fundraising efforts.
“We can assist and support families who have been affected by genetic or rare conditions, but it won’t end until we find a cure,” Ms Cross said.
“We need to start from the source of the problem.
“Let’s protect our children by giving them a healthier, longer life.”
On Friday 3 August, businesses, shops and schools all over Australia took part in Jeans for Genes Day.
Jeans for Genes take donations all throughout the year, and you can find out more at www.jeansforgenes.org.au.
Caption: Carole Cross, who struggles daily with myotonic dystrophy, helped out in Hobart’s Jeans for Genes fundraisers.