Bella age 9 has been diagnosed with severe Fascioscapulohumeral Muscular Dystrophy. Bella’s family has kindly shared their experiences with us.
(Image: Bella with Noah’s Ark Children’s Hospice Specialist Carer)
Tim, Bella’s dad:
Bella was a few months old when we first realized that something was not right. We spent the next five years or so receiving more unwelcome news as other symptoms of her condition became more apparent and the Specialists struggled to find a diagnosis.
I felt utter loss and desperation. As a Dad you are expected to be able to fix things and put them right, but as the realisation dawns that there are some things you can’t control, no matter how hard you try, I started to question what my role was meant to be.
I remember feeling very angry. I felt resentment towards other parents who I felt would not understand. As a result I didn’t talk to anyone about how I felt. I didn’t discuss Bella at work and was even loathe to discuss the situation with friends and family – instead I got my head down at work and bottled up my feelings.
This had a very destructive effect on my relationships with my family, including my other children, and resulted in a fair amount of stress for me both at work and home.
I worried about the impact of the situation on our emotions and finances as it became apparent that we would have to move to a different house, buy a new car, etc to deal with Bella’s progressive disability. I felt very isolated at this time.
It seemed that everything was out of my control and I ended up in a vicious circle of sleepless nights, stress and poor diet. My health deteriorated, my temper became increasingly frayed and my weight ballooned. It took me a long time to realise that my self-obsession was counter-productive.
By getting involved with the Noah’s Ark Children’s Hospice Parent groups, talking to health professionals and accessing respite relief from both Noah’s Ark and Haringey Council, I have learned many things: firstly, that I had to recognise that everything was not right with my life and actually identify what my weaknesses were – and split out things I could control and things I couldn’t; secondly, once I had done that I slowly realised that there were actually plenty of people who did understand what I was going through and were willing to help me with those problems – whether they were practical or emotional; and lastly there is a huge amount that you can do for yourself – not least understanding that I had been blessed with four wonderful children who were all different in their own way and who were all going to provide me with moments of sadness and laughter in their own special ways, and in that I was no different from any other dad out there.
Over the last 2 years I have spent time getting both my mind and body healthy, taking advantage of the respite care and other services available. As a result have learned to relish the time I have with all of my family; taking great pride from achieving simple things with Bella and the others (like going camping in the Lake District) that a few years ago I thought we would never be doing.
I started running and then ran my first half marathon just over a year ago to raise funds for Noah’s Ark. I am just about to compete in my second London Marathon – and will have raised over £25,000 in sponsorship for both Noah’s Ark and the Muscular Dystrophy Campaign over the last 18 months.
We are also looking ahead and currently planning how we can manage to take Bella and all the other children on a skiing holiday next year. With the great back up that we now have in place from Noah’s Ark and elsewhere we know that nothing is impossible.