Co Down mum tells how daughter has lived with MS through her teenage years
In this Multiple Sclerosis week, Jenny Lee chats to Downpatrick mother Theresa Leavy, whose teenage daughter Melissa was diagnosed with the condition when she was just 12
WHEN Downpatrick girl Melissa Leavy was 12, her mum noticed that one of her eyes had 'turned' and couldn't focus properly. However, rather than a simple squint, it turned out to be one of the first symptoms of an illness that was to change her Melissa's forever.
A Friday afternoon appointment with an optician was followed with an emergency MRI and lumbar puncture at Belfast's Royal Victoria Hospital for Sick Children, and the neurologist diagnosed her with multiple sclerosis (MS).
Usually thought of as an adult illness, approximately 4,500 people in Northern Ireland are diagnosed with MS. A small, yet increasing, number of them are children.
While there is yet no cure for the lifelong condition, there are treatments available to help relieve some of the symptoms of the disease.
"Diagnosis, while still challenging, is improving for neurological conditions such as MS. This means people are being diagnosed at a younger age," says Patricia Gordon, Director MS Society NI.
"We have certainly noticed this over recent years, to the point where we now have support groups in place specifically to support younger people. Everything we know about MS shows that there are improved outcomes with early diagnosis and early treatment, so earlier diagnosis is positive."
Theresa Leavy's reaction to what the doctors were telling her about her daughter was typical of a mother's response.
"I wished it was me and not her. You don't want your child to suffer," she recalls. "It's a horrible disease and I wish I could take it away from her."
The symptoms of MS vary widely from person to person and can affect every part of the body. Melissa's numerous symptoms have included headaches, dizziness, falls, loss of taste, double vision, bowel difficulties and cognitive problems.
The condition impacted on her ability to maintain education; she had six relapses in the first 18 months and in the first four years following her diagnosis, missed 320 days of school, having to repeat year 11.
"Melissa's MS is very aggressive. Last year she was at her worst and had to come down the stairs on her bum. She needed help to get from her wheelchair to her toilet and couldn't even cut up her own food. She is on her third treatment now and thankfully has improved a lot," says her mum.
Her family are all too aware that "flare-ups and new symptoms are always around the corner" and they inevitably worry over her future.
Having celebrated her 18th birthday in February, Melissa's slice of her Nathan Carter-decorated birthday cake is still sitting in the freezer, after she developed neuralgia – a stabbing, burning, and severe pain in her mouth, due to a damaged nerve.
"It's not always obvious that illnesses are due to MS. When Melissa developed what she thought was a toothache the day before her birthday, the dentist found nothing wrong with her tooth and it was through speaking to others with MS that we discovered it was neuralgia," Theresa explains.
Although her childhood ambition to be a pilot is no longer possible, Melissa is currently studying Leisure and Tourism at Northern Regional College and hopes to work in the leisure industry in some capacity. She is taking further steps towards independence by taking driving lessons and has a boyfriend, though her MS does limit her ability to forward plan and enjoy life to the full.
"There have been tears over many a concert ticket because she has been too unwell or fatigued to go," her mum says.
While Melissa's "teenage years have been robbed by MS," her mum praises her daughter's positive attitude.
"She has had to adapt to having a critical illness overnight and go to bed at night, not knowing if she is going to be able to walk, or see the next day.
"There are times I get down and cry about Melissa's condition, but she is an inspiration to me. She doesn't complain. She's very determined and tells people "it's only MS – I'm not going to die from it".
Theresa is passionate about fulfilling her daughter's wish of "receiving a cure for MS before she is 35" and thus has become very involved with volunteering, campaigning and fundraising for the MS Society in Northern Ireland.
"My desire is that my baby girl can plan for a quality of life and not inevitably end up in a wheelchair."
This is a hope shared by the MS Society.
"We believe it is possible to revolutionise MS treatment in our lifetimes" says Patricia Gordon. Just a few decades ago there were no treatments at all; now there are a range of options with even more on the way. As well as dramatically improving symptoms and slowing progression, we hope to ultimately bring progression to a halt."
Theresa is also passionate about raising awareness of the condition and has helped to run an interactive workshop called Digesting Science, teaching children who have a family member with MS about the condition. It is hoped to extend this throughout the north of Ireland later this year.
"MS is a hidden illness. If people know about it they will make allowances for the fatigue which affects her on a daily basis, Melissa wouldn't get stared at for using a disability toilet or parking in a disabled bay.
"Often people tell Melissa she is looking great – but then she reveals her younger sister, Kiera, did her hair and make-up and her mum dragged her out the door when all she really wanted to do was curl up and go to bed."
:: MS Week runs until April 29. For further information and support visit Mssociety.org.uk/northernireland
WHAT IS MS?
Multiple sclerosis (MS) is an autoimmune condition, which is when the immune system mistakenly attacks a healthy part of the body – in the case of MS, the brain or spinal cord of the nervous system.
It can cause a wide range of symptoms, including problems with vision, arm or leg movement, sensation or balance.
It is a lifelong condition, for which there is currently no cure, that can sometimes cause serious disability, although it can occasionally be mild. In many cases, it’s possible to treat symptoms. Average life expectancy is slightly reduced for people with MS.
It's most commonly diagnosed in people in their 20s and 30s, although it can develop at any age. It's about two to three times more common in women than men.