The father of a Laois toddler who suffers from a rare condition, Dravet’s Syndrome, has expressed his appreciation to his local rural and farming community for its ‘outstanding’ help in raising funds to help in her treatment.
Little Mary Claire Knowles from Ballyroan suffers from Dravet’s Syndrome, a catastrophic lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures.
Common issues associated with Dravet’s Syndrome include: behavioural and developmental delays; movement and balance issues; orthopaedic conditions; delayed language and speech issues; growth and nutrition issues; sleeping difficulties; chronic infections; sensory integration disorders; and disruptions of the autonomic nervous system, which regulates things such as body temperature and sweating.
Mary Claire, who will be three in April, has already suffered 95 seizures. “The majority of them lasted for over an hour to two hours and lead to respiratory arrest,” said Anthony, whose brothers Michael and Patrick are beef farmers.
Researched
Constant care is required and current treatment options are limited. After researching the condition for the past two years, Anthony and his partner Rose Maher, who also have two sons – Anthony junior, four, and Daniel, seven – see travelling to The Hague for cannabis oil as Mary Claire’s best hope.
“I’ve been over twice already and I’m going over again in a few weeks. We have to wean Mary Claire off her current medication first and that could take two to three months.
“She is off one medicine at the moment. Dravet’s Syndrome is drug-resistant. The pharmaceutical solutions work for so long and then she becomes immune to them. She is very sensitive to medication.
“Cannabis oil is our best option. There is nothing else out there. If a year down the road, we have a good case that it’s working, we can take our case to the HSE for funding but in the meantime we are happy to spend the money I won on Winning Steak and the funds raised to help Mary Claire on it.”
Last November, Anthony appeared on the RTE game show Winning Streak, winning a car worth €25,000 and €32,000 in cash after spinning the wheel.
Fundraisers
There has also been a huge fundraising effort to support the family’s efforts. This included an auction of farm machinery, livestock and fodder, which was organised by Eileen Scully in Ballyroan and brought in €17,600.
Other fundraisers included a fashion show in Timahoe and the running of a marathon that raised €3,555 by Claire Duggan from Stradbally pharmacy.
Anthony said the family is really grateful to all who have donated towards Mary Clare’s treatment.
“The response from Ballyroan, Timahoe, Stradbally, and other parts of Laois as well as the farming community and Ladies Only Lifting, Portlaoise, has been enormous. There was a tractor run in Wolfhill; people have run marathons and local schoolchildren have helped. People have been fantastic.”