‘My class is really excited about the readathon . . . they were really surprised to learn I have MS’

All children love stories and never has reading been so important – with the pandemic causing us to press pause on normal life, escaping into a fantasy world is a very welcome reprieve for all of us.

And with the annual MS Readathon under way this month, MS Ireland are hoping that adults will also get involved in the campaign. "The MS Readathon is Ireland's biggest sponsored reading initiative when young readers raise funds for vital services to help people living with multiple sclerosis in local communities," says Ava Battles, chief executive of MS Ireland.

"Originally launched by Roald Dahl in 1988, it has grown ever since and this year, due to the economic impact of Covid-19, fundraised income is expected to be down 38 per cent on previous years – so we are also encouraging 'grown-up' readers to take part and rediscover their love of reading."

Almost 10,000 children took part in the campaign last year, each with an average of nine sponsors. But this year, due to health-and-safety guidelines, the Readathon had to be “reimagined” and for the first time in 33 years, the event will take place online.

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“Our amazing new website allows children to review and log their books, create avatars, download resources, enter competitions and win stars and prizes,” says Battles. “All the fundraising is done online, so there is no need to visit other households with dog-eared sponsorship cards and the net can now be cast much wider as family members in further-flung parts of the globe can now get involved too.

“We’ve also made it easier and quicker for teachers to get their schools involved and have taken the decision to let the big kids in on the action – so grown-ups can take part as solo readers or as part of a team. We are asking people of all ages and all reading abilities (audiobooks work too) to get involved in the 2020 MS Readathon.”

Debilitating

Maggie Green is fully engaged with the programme as not only is she a reader and a teacher, but she also has MS and knows how debilitating the condition can be.

“I was diagnosed four years ago after experiencing some numbness and tingling which the doctor initially thought might be a trapped nerve,” says the 39-year-old, who is married to Danny McFadden and has two children – Abigail (10) and Conor (eight). “But the symptoms worsened, and I felt like I was wading through water. I was sent for an MRI and then referred to a consultant where I was diagnosed and put on medication.”

The Donegal woman now has annual appointments to monitor her condition, but thankfully she is managing well with the current treatment.

“So far I have been lucky,” she says. “I regained sensation gradually and although I suffered from fatigue I could get on with my daily life. My family has been incredible and although my diagnosis came as a shock to us all, they all rallied around and helped me – as there are still days when I wake up in considerable pain or my sight is blurred, or I feel exhausted and I have to rest. Initially I was inclined to push through, but now I know that doesn’t do me any favours and ultimately it will prevent me from looking after my children properly.

“But on the whole, my life is really good – I have two incredible children, a wonderful, supportive husband, a close and caring family, I teach an amazing class and I’m studying something I love – so life is good.”

The mother of two, who teaches senior autism spectrum disorder (ASD) classes at Letterkenny Educate Together national school, says MS has not affected her job, although some days are challenging if she is experiencing pain. But she rarely misses a day and says her pupils, who are looking forward to the readathon, had no idea that their teacher has the condition.

"My class is really excited about the readathon and when I showed them the video I made with MS Ireland to promote it, they were really surprised to learn that I actually have MS," she says. "They had lots of questions and are very eager to raise as much as possible for MS Ireland. My own children and their classes are also getting involved and I remember doing it myself as a child, so it's lovely that my own two are taking part this year.

“MS Ireland provides an invaluable service and in order to do this they need the vital funds raised by the readathon. It’s such an easy and fun fundraiser to be part of and encourages young and old alike to pick up a book and read – and I’m hoping that teachers all over Ireland will get their classes and school communities involved.

“MS wasn’t something I ever expected to come into my life and I am so glad that MS Ireland were there for me when I needed them. And I know the funds raised will enable them to continue to be there for others diagnosed with MS.”

Isolation and anxiety

Ava Battles says the pandemic has had a significant impact on people living with the condition as many have reported feelings of isolation and anxiety, while delays to services and supports has also created additional stress.

“Issues emerged early on in the pandemic as some community members were fearful of homecare workers carrying the virus in to their home,” she says. “Family Carers Ireland recently published Caring through Covid, a report that said 14 per cent of homes normally availing of homecare services elected to temporarily suspend supports in order to reduce the risk of infection.

“In some instances, this meant that individuals went without support and in other cases family members were able to assist with care needs. But this put additional strain on families and individuals and has resulted in loss of income for some who had to prioritise taking care of a loved one over their employment.

“While having MS does not mean a person is more vulnerable to the virus, being on certain medications or having severe disability does increase this risk and many of our community members would have been advised to cocoon. This was problematic for some, including those who may have been required to return to work in public-facing roles – and so were faced with a reality of returning to work in order to provide for themselves and their families, despite being advised to cocoon.

“The Covid-19 pandemic has had a significant impact on the lives of people living with multiple sclerosis, which does not stop during the pandemic – so the needs of our community continue.”

About MS

– Multiple Sclerosis is the most common debilitating neurological condition affecting young adults in Ireland.
– There are 9,000 people in Ireland living with the condition.
– It affects the motor, sensory and cognitive functioning of the body and is usually diagnosed between 20 and 40 years of age.
– The impact of MS on individuals, their families and the community can undermine the resilience that is needed for individuals to remain purposeful and in control of their lives.
– Three times more women than men are diagnosed with MS.