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A mother’s crusade to save child from pain

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Jackie Ffrench and her daughter Misha. “I was watching her slowly falling apart on me,” says Jackie. Photo: Joe O'Shaughnessy.

Lifestyle – Judy Murphy meets a woman who battled hard to identify her daughter’s condition that left doctors baffled

For years Jackie Ffrench was sick telling people, including those in the medical profession, that there was something wrong with her daughter, Misha. The usual response was that she was simply an overly protective mother.

One person even remarked that she had Munchausen’s Syndrome on Misha’s behalf – that’s a condition where someone pretends to be ill to get extra attention.

But Jackie knew in her gut that Misha, who is now 11, had a problem, something that was there from babyhood.  – she was so weak that she was unable to open the door of their house in Renmore, tie buttons on her clothes, or hold a pen properly when learning how to write.

“I was watching her slowly falling apart on me,” says Jackie over tea in their cosy living room. She and Misha’s father are divorced but have worked together to try and get care for their daughter, a happy, sociable 11-year-old.

They went to doctors and specialists who examined Misha and took blood for tests – all of which came back negative. The medics here in Galway were excellent and sympathetic, but no diagnosis was forthcoming.

Misha suffers from Juvenile Arthritis (JA), one of a 1,000 children in Ireland with the condition, which occurs when a person’s immune system starts attacking their joints. But the medics in Galway didn’t know that juvenile arthritis doesn’t necessarily show up in blood tests. They are used to dealing with adults and the process is different, says Jackie.

“When we look back, the signs were there for years but were left undiagnosed,” she recalls. “Misha was a slow walker and she didn’t crawl, she bum shuffled. She’d have unexplained accidents and constant pain but that was all put down to viruses.”

From the age of five, Misha had loads of injuries, with her left side being more problematic than her right. She is tall for her age, so some experts diagnosed ‘growing pains’. It wasn’t.

Her parents treated her with acupuncture and kept her diet dairy free, which helped with the symptoms. But the underlying problem was not being treated.

They were constantly “in and out of A &E with injuries and in 2012 Misha had a very bad fall in ballet”, recalls Jackie. “The doctor said it was a simple sprain and she’d be better after a few days. But she spent 12 weeks on crutches with torn ligaments.”

Just before that, Misha suffered a hairline fracture on her elbow and she damaged the elbow again shortly after her ankle had healed. One helpful person suggested that maybe she was “a bit clumsy”.

By then, Misha’s grandmother pointed out that the young girl was very like Jackie’s sister Bernie, who had suffered from juvenile arthritis. Still, there was no diagnosis.

On their 11th visit to A&E an observant nurse pointed out that there had to be an underlying cause. Misha’s bloods were taken again.  Again, the results were negative and there was no indication of inflammation, although she suffered from other illnesses, all auto-immune related.

From second class Misha’s handwriting had not improved. She had no energy and by last year, it took her two and a half hours to do her homework. At times she couldn’t sleep and at other times, she couldn’t stay awake.

In late 2013, Misha’s hand “was killing her and her toes were starting to turn in”. Jackie had had enough. She rang Merlin Park and spoke to an orthopaedic specialist. He examined Misha in November and suggested arthritis. There were more blood tests and an ultra-sound scan – again the bloods came back clear. However, the ultra-sound showed hotspots of active disease and scarring from previous inflammation. By then Misha was depending on Calpol, Nurofen and anti-inflammatory cream to try and keep the pain at bay. And not very successfully, despite her high pain threshold.

For more, read this week’s Galway City Tribune.

Connacht Tribune

Making a difference – a long way from home

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Sorcha Fennell.

For as long as she can remember, SORCHA FENNELL harboured a dream to work in international development – and the Galway woman, who is Director of International Operations with Trócaire, has fulfilled that ambition in some of the most challenging places in the world, as she reveals here.

As my children and their friends tell me, choosing a career nowadays is a complex task with a dizzying amount of choices in what, where and how you work.

I had no such trouble.

From a very young age I knew I wanted to work in international development and I feel lucky and grateful to have been able to fulfil that wish. I have lived and worked in some of the world’s most challenging countries in Asia, Africa and Central America and in my current role I am responsible for the International Operations and projects we manage in Trócaire.

Context can have a huge bearing on our choices and for me going to school in Coláiste Iognáid in Galway was a formative experience. Their emphasis on social justice influenced me at a time where we were living through the troubles in Ireland, famine in Africa and unrest in Central and South America.

My family had an influence as well. My mother had worked with Palestinian refugees in Israel, my grandmother had been a doctor in Africa and my great Aunt was a Franciscan nun working as a missionary in Uganda.

I was always a really engaged activist and even started my own Social Action Group at school. After studying social work in Derry for two years, I decided to go overseas and volunteer.

Nine days after my twentieth birthday, in January 1991, I paid for myself to fly to my great Aunt Terry in Uganda and volunteered as a teacher in a former leprosy colony, that was now a school run by her group of incredible Franciscan nuns, the youngest of whom was 76 and the oldest was 89.

It was a truly eye-opening experience. The country was ravaged by AIDS and still recovering from the brutal reign of Idi Amin.

It took me a while to get used to it, to absorb the smells, the sounds, the numbing poverty. All my senses were on high alert. It felt very far from home and as a social person the new sense of isolation life took a bit of getting used to.

But it was also exciting, challenging and a time of incredible learning. Teaching the children was something I loved. I became aware of the transformational potential of education and how parents wanted above all to give their children the opportunity of school and learning.

Before I left, I decided to help some of them get to secondary school so I hatched a plan. I took out a loan, bought loads of high-quality African art and crafts and brought them back.

I approached Sabina Higgins who helped me put on an African Exhibition and raised enough money to send them to school. The local Galway community was great too. I remember Kenny’s Bookshop giving me loads of Ladybird books to take back to the children.

When my time in Uganda was up, I knew I wanted to continue this kind of work. I came back to Ireland, studied Development Studies and then joined Goal, working in South Sudan for 3 years until 1997.

The people there were suffering from the twin ravages of war and famine, and I learned a lot about the international and political context that shape those events. Southern Sudan and its people those people deeply influenced my view on development, and I still count the people I met there as my friends.

After meeting my husband and spending a year traveling, we moved to Honduras for his work.

Soon after we arrived, Hurricane Mitch happened, the deadliest hurricane in history at the time.  It’s difficult to describe the devastation we witnessed. People, houses, crops just disappeared. Many had been swept away in their beds.

I remember a woman standing with one flip flop and a plastic bag and a look of total shock. That was all she had left.

The lack of basic infrastructure meant so many people died that shouldn’t have. Existence was tenuous, people living in shacks at the edge of rivers with no ownership or land.

I contacted Trócaire and told them I had experience and was on the ground and so started working with their emergency response.

What I worked on in the following months and years, showed me how utterly transformative aid and support can be.  I began to understand the importance of sustainable, long-term development and tackling the fundamental structural issues that often underpin poverty.

In Honduras, Trócaire began a campaign to ensure women got title to and ownership of their land. Generally, land and home ownership was in the man’s name, which left women with no security.

During the reconstruction phase, we ensured that title deeds were in the name of the youngest child or mother. This simple move was transformative.  We watched whole communities emerge, building not just the security of a roof over her head, but the security of ownership and the protection that ensured. At the opening ceremonies of these estates, women would come up and hold up their key knowing it meant safety, lighting, protection for your children now and in the future. It’s the difference between a band-aid, (which can be necessary in an emergency), and a cure.

Currently Trócaire works in some of the world’s poorest countries. Myanmar, Somalia, Ethiopia, the DRC among others. Hundreds of millions of lives are at risk every day from war, famine and climate change.

In this context, the impact of helping one person can be so simple yet profound. The Democratic Republic of Congo is one of the most insecure places in the world, especially for women. There are around 138 militia groups operating in the Eastern DRC and insecurity is a constant reality for the communities and for our staff.

One day we were meeting a women’s group with whom we had recently run a literacy programme. We sat in a meeting with these women and asked what it had meant for them.  I’ll never forget one woman standing up and simply saying “now I can write a text.”

The enormity of this woman to be able to now read warnings that will impact her security or ask for help is profound. The power that simple skill can now give her can’t be underestimated.

That’s all overseas aid, or support organisations like Trócaire is – we work with people who don’t have the menu of options we do, and help them create those options.

It’s not charity, it is simply enabling and empowering those who are vulnerable to poverty and violence.

The people I have met and worked with over the years are strong, powerful, resilient and dignified people who find themselves in environments and conditions that are simply impossible to get through without some form of support – the support is an enabler, capable of transforming lives – but the people we work with are the real agents of change.

 

 

 

 

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Connacht Tribune

The Transformation Journal to help achieve a better you

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Author Marguerite Tonery with her new foal, Danny Boy.

Health, Beauty and Lifestyle with Denise McNamara

Award-winning children’s author Marguerite Tonery has published her first self-help book to help people reach their goals. The Castlegar woman, who set up her own printing company, Tribes Press, to help authors see their work in print, has produced The Transformation Journal, to help people “rise above your current challenges”

She is currently in the throes of her own challenges. When we speak, she is on a break from her family’s stables, Cooper’s Hill Equine in Castlegar village, where she has moved into for the last three months. Her beloved mare Castlefrench Clover died, leaving behind a tiny foal. She is now bottle-feeding Danny Boy round-the-clock. His antics have become a bit of a hit on TikTok.

“This book is for anyone who is not happy in their lives for whatever reason, and who wants to change. As we change our environment changes,” she reflects.

“It’s to help you to gain a deeper awareness of yourself and how you operate in the world through meditative and psychological techniques.”

For more, read this week’s Connacht Tribune.

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Or purchase the Digital Edition for PC, Mac or Laptop from Pagesuite  HERE.

Get the Connacht Tribune Live app
The Connacht Tribune Live app is the home of everything that is happening in Galway City and county. It’s completely FREE and features all the latest news, sport and information on what’s on in your area. Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.

 

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Connacht Tribune

Capturing Martin’s Magic

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Christian O’Reilly with the poster for his latest play, No Magic Pill, which will be staged at the city's Black Box from September 27-30 before transferring to the Civic in Tallaght for Dublin Theatre Festival. PHOTO: JOE O'SHAUGHNESSY.

Lifestyle – Christian O’Reilly’s new play No Magic Pill was a slow burner. Now that it’s finally being staged in Dublin and Galway, he has fulfilled a longtime promise to the late disability campaigner Martin Naughton from An Spidéal. Christian tells JUDY MURPHY how this brilliant and contradictory man changed lives and inspired him.

Christian O’Reilly was fresh out of DCU and in need of a job when he first met Martin Naughton, originally from An Spidéal and living in Dublin. Martin, who had muscular dystrophy, was an activist, seeking rights for disabled people and had established an Independent Living group to do this. He needed someone to lobby on their behalf.

That was in 1995, at a time when Christian, a Communications graduate, knew he wanted to be a creative writer, but also needed money to live.

“I probably turned up to the interview in a shirt and tie and Martin was wearing a fishing hat and smoking a cigarette,” recalls Christian with laugh.

Martin introduced himself by telling Christian to “shake the thumb” and they got chatting,

“I didn’t even know what lobbying involved. But he must have seen something in me because he gave me the job. Within a week, I was introducing speakers at a conference on disability rights,” says Christian.

“I had no confidence but he saw a willingness to work and he had the potential to find out what talent people had.

“He would see a capacity in people to do something and challenge them to do it – and they always rose to it. He railed against the notion of disabled people as passive and the Centre for Independent Living was like the IRA of disability”.

For more, read this week’s Connacht Tribune.

Connacht Tribune Digital Edition App

Download the Connacht Tribune Digital Edition App to access to Galway’s best-selling newspaper.

Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.

Or purchase the Digital Edition for PC, Mac or Laptop from Pagesuite  HERE.

Get the Connacht Tribune Live app
The Connacht Tribune Live app is the home of everything that is happening in Galway City and county. It’s completely FREE and features all the latest news, sport and information on what’s on in your area. Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.

 

 

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