Paula, Bohdan and Nicole

This page is first of the set of Personal Stories of Type I babies.

Nicole was always special. She attracted so many people with her deep blue eyes, and a smile that was so magical that it could set the world alight. She was always alert, and from a week old would smile at the sight of a camera. In fact, Nicole was a model baby - perfect in every manner.

We had waited for so long for Nicole, yet before long we had forgotten what life was like without her. She gave us so much to live for. All our hopes and aspirations revolved around her. We wanted the best future for her, just like any other parents.

Well, most of those dreams were soon shattered. Only five and a half months after her birth, Nicole was diagnosed as having SMA Type I - the most severe form, which apparently claims the lives of 80% of babies before their first birthday. Our pain was unbearable. Nicole was terminally ill, yet she looked so healthy. We had no idea that there was a problem, yet the prognosis couldn't have been worse. No cure, no treatment - how helpless we were. For the next few weeks we continued to think of ourselves - wrapped up in our own emotions and full of self-pity. Nicole was still Nicole, as perfect as the day she was born. How dare we consider giving up on her? She was still our child and needed us to make every day a special one? We couldn't alter the past, but we could certainly make the most of our future, regardless of the time span. From that moment on, we faced one day at a time, turning negative attitudes positive. We became stronger as a family.

We researched into SMA as much as possible determined we would find a cure. Nicole was unique and despite the odds against us nothing was going to stop us. Our little girl was so full of life - and 'where there's life there's hope!'

We joined JTSMA, and soon after we were introduced to Dr Richard Appleton and his team. They all believed in our little girl and treated her as someone so special, so important, and yet so many people had forgotten to do that. We can still recall the words of Betty Calvey, "We can do a lot for this little girl!" Those words will stay with us forever. Nicole was too young to talk, but her eyes spoke a thousand words. We think she understood everything that people said. Her expressions were wonderful.

Nicole's qualities were unbelievable. Her inabilities were simply challenges that were unique to her. She was such a determined little girl. Her achievements overwhelmed us but in different circumstances would we have appreciated her so much?

Nicole gave us the best times of our lives in her short life. We had constant reminders of what the future held for her but we never believed it would happen. She passed away at the age of nine months and three weeks and the devastation is still unbearable. Nicole was born with SMA and died through SMA. We never considered taking it away from her; we just hoped they'd find a cure for her, and many of her friends. They are all too perfect to change.

Nicole will remain a remarkable child; she has touched so many lives. We were given the 'greatest gift of all'; she enriched our lives so much and taught us to 'never give up.'

Physical

When we bought new clothes for Nicole, we always considered the texture and fabric to avoid buying clothes that restricted her movements further. We adapted toys to meet her needs. We made lightweight toys for gym's - i.e. bells on ribbons, etc. Children with SMA have a unique social ability, which requires constant stimulation. Nicole really enjoyed being massaged, which enabled us to develop a closer bond with her.

Try using an inflatable baby pool with towels stacked as pillows for support. This can provide your child with freedom and independence.
Consider passive physiotherapy and moving your child's position whilst sleeping, to avoid stiffness and muscle seizure.

Support

The local children's respite centre can provide facilities with medical support at hand. They also probably have experience of caring for a child with SMA.
Stay positive, time is precious and unfortunately we are not given time to adjust with SMA Type I. SMA is an unusual condition to manage. Get as much advice from people who have, or are experiencing the challenges that you are.
Try to get access to the Internet. There is lots of information and support from people who may be at the same stage - at the same time as you.
Stay open-minded regarding diets and therapies developed in other countries. There is a lot of research taking place in America into diets, etc.
Do not let doctors dictate all decisions. Gut reactions from parents are sometimes the most beneficial for your child. Many doctors know less about SMA than they care to admit to.
Investigate any medical test that is suggested for your child. Tests vary in many regions.

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