A Sydney mother’s desire to ‘be there’ for her young daughter as she grows up is behind her radical decision to travel to Russia for controversial stem cell treatment for multiple sclerosis (MS). Melissa Cervanora, 37, shares her story with Kidspot.
First published October 24, 2017 at kidspot.com.au
Before my daughter, Ruya, came along my then husband and I were living in Sydney. We’d met while I was teaching English overseas and married in Sydney in 2006. I fell pregnant easily and it went relatively smoothly although there were some complications at birth, including placental abruption. Ruya was born in Sydney in 2009 by emergency caesarean.
When our baby was about nine months old we decided to move overseas for a few years so our daughter would get to know her family and heritage. Six months later I returned to Australia with Ruya to attend my brother’s wedding. We were planning on staying a month but halfway through our visit, some unusual and disturbing things began to happen to my body …
The diagnosis
I started to drop things. My left hand became increasingly numb and got weaker and weaker. Then, one day while I was holding Ruya, who was 18 months at the time, I fell sideways into my mother who, thankfully, was standing beside me. It was then that I knew I needed to see a doctor.
By the time I got an appointment with a neurologist the whole left side of my body was paralysed and I couldn’t move or feel my left arm or leg. Eventually, I got an MRI, which confirmed I had MS. A year earlier my sister had also been diagnosed with MS and I remember thinking I’d be alright because she was doing OK … but back then I knew very little about the disease or just how severe my disease onset would be.
Changing a nappy with one hand is immensely difficult and I had to learn very quickly how to take care of myself and my daughter with the function of just one side of my body. But I was so fortunate to be staying with my parents and my mum took some time off work to help me shower, dress, cook and look after Ruya.
I was still breastfeeding and on the day of my MS diagnosis, I was told I had to wean Ruya over the weekend and be in hospital the following Monday for treatment. Weaning a baby in a couple of days is hard but weaning a baby that you can’t even cuddle is harder … she didn’t understand why I was denying her the one thing that gave her so much comfort.
It was during this period that my marriage fell apart. The day I was supposed to return overseas and to my husband was the day I was diagnosed with MS. I had to stay in Australia where I could get the treatment and support I needed. When my husband told me our marriage was over it hit me hard and coming to terms with that fact was a shock – I was forced to let go of any hope I’d had for more children and accept that I was now a single mum with an incurable illness. I had to accept that my life was taking an entirely different path to the one I had expected to be travelling.
A mother’s love
From the moment of my diagnosis Ruya has been at the frontline with me, witnessing the constant ups and downs of this debilitating condition. In some respects she is responsible for me just as much as I am responsible for her. This is inevitable, I think, as young children with sick parents often have to grow up quicker and take on responsibility beyond their years.
Ruya is now eight years old. She’s my companion, the love of my life, and together we’re learning how to live and thrive with MS under our roof. I’m always exhausted and in pain and therefore not as available to my daughter as I’d love to be. But the silver lining to being diagnosed with an incurable disease is the resilience both Ruya and I have developed. We’ve learnt how to cope with uncertainties in life and to always live in the moment – we don’t take each other for granted.
A chronic illness such as MS puts things into perspective and everyday I’m reminded of what’s most important – and that’s my daughter. She is an amazingly creative child, content with her pencils, her books and her imagination. She’s generally a happy, healthy kid regardless of what is going on around her and I don’t know where I would be without her.
I’m not the mother I thought I would be – the symptoms of MS have already compromised so much of my life. Sometimes I find myself wanting her to hurry up and learn everything now because I don’t know how long it will be before I am unable to guide her, look after her and give her the knowledge that she needs.
Finding hope in Moscow
I used to dismiss the MS brain fog and cognition issues but as time goes on it has appeared as one of my most troubling symptoms. And although it is undetectable I have the beginnings of a speech problem, with a tongue tremor, facial/ jaw weakness and pain. In the past I would negotiate with myself, “OK, MS, you can have my hands and my legs but don’t take away my mind or my speech”. I thought that if I could still talk and think then I would still have a lot to offer my daughter.
I’m planning to travel to Moscow for stem cell treatment in January next year. The treatment is called HSCT (Hematopoietic Stem Cell Transplantation) which has the potential to halt and possibly reverse my MS. There’s a lot of controversy surrounding it as it’s believed the risks may outweigh the benefits for MS patients. Although there has been lots of research overseas and many Australian MS patients have had success with the treatment, it is unfortunately still only in the trial stages in Australia.
I need to raise a total of $70,000 to cover the cost of my travel to Russia, the treatment and my after-care. Over the past 12 months, thanks to the generosity of my family, friends and my local community, I’ve raised close to $22,000 – but I’m still a long way off my target.
There are so many things to consider before deciding to undergo such a treatment. But my greatest consideration of all is Ruya. Having reached the end of my treatment options, most of which also have very serious side effect profiles, It’s very hard to sit back and do nothing – HSCT works better the earlier in the disease it is performed, which is why I’m in a hurry to get to Russia and have it done.
For me, undergoing this treatment is definitely worth the risks – I need Ruya to know that I did absolutely everything I could to stay healthy and to be with her.
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