Marathon runners to save their sick child

Antonio RUZZO - IL GIORNALE 02 DIcembre 2007

A six-month-old baby is affected by spinal muscular atrophy. Her parents run to fund research.

They put the acronym “Sma” before marathon and came  up with “Smarathon”, now Elena and Luca’s only reason to live. They are running to raise funds for research on SMA, a rare disease that blocks the synthesis of a key protein for the healthy development of muscular tissue. Because she is affected by SMA, Rebecca, their twenty-month-old daughter, cannot stand, move, turn in her sleep, cough or do many other things that children her age do.

The “sentence” arrived unannounced nine months ago when Rebecca was fine and nobody suspecting anything was amiss. “She was only a little lazy – says her mother – but when I took her to Besta (a Milan hospital) for a visit, I immediately realized that something was wrong when I saw the look on the doctor’s face…And I quickly learnt first-hand about SMA. Now I know that it is a genetic disease, that there is no cure, that one adult out of 40 is a healthy carrier, that it affects one every 6000 live births, that a child who is diagnosed with first level Sma has a life expectancy of a year, and that in its less serious forms in 78% of cases there is a life expectancy up to 30 years of age in a wheelchair. Research is the only hope and thankfully things are happening…”.

Elena, 39 like her husband, works in PR. She talks about what has happened to her without feeling sorry for herself, she is full of energy, you can tell that she is a fighter: “My life and Luca’s life have changed. At the beginning it feels like a nightmare and you keep telling yourself that sooner or later you will wake up. Then you realize that you must start dealing with all those things that in your normal everyday life you had never given any thought to: architectural barriers,  lifts without a ramp, hospitals, visits to the consultant, fear…”

And what about Rebecca? “Rebecca already knows that she will never walk – says Elena – like all children affected by Sma she has above average intelligence, and I don’t know whether this is good or bad. We always try to play with her: whether it’s at night when she wears her braces that she calls “Pippo”, or when we put her on the “cat”, her walking frame. However I don’t want to make too much of a fuss around her.

This is unfortunately something serious and we are trying to raise funds to help our daughter ourselves. That’s how we came to think about Smarathon. We’ve always been sporty types, so we immediately liked the idea.”

Their contact is Louise Smith, in Canada. Louise also runs marathons and she has a daughter called Rebecca who is affected by Sma. An uncanny coincidence. Elena and Luca found out about Louise, they contacted her and they immediately realized that they could help each other out. In Canada the association set up by Louise has raised 710 thousand dollars in donations, t-shirt sales and the organization of marathons. All these funds have been allocated to finance research.

In Milan, researchers at Besta have recently started experimenting on a new protein that could be a cure for muscle degeneration. Elena, Luca and Louse kept  in touch and they started to set up Smarathon. They’re there now, they’ve got a memorandum of association, a governing statute, and they are ready to start with a group of friends who will begin by running the Milan City Marathon. They will run to help Rebecca and other children affected by Sma. The team is small at the moment, and all its members are Italian, but the hope is that it will get bigger and bigger. “I’m not much of a runner, but my husband has always had a great love for marathon running. He even took Rebecca in her stroller at the Stramilano (an annual 8k race in Milan). We’ll try to set up a series of running events that could be called “Smarathon tour” where athletes and families willing to make a contribution could take part.”

Luca will leave Piazza Castello with Christian, from Salerno, and other friends coming from Rimini. Starting from Milan they will run the most prestigious marathons in the world wearing a red uniform featuring the “Smarathon” logo. They will be thinking of Rebecca, of her little Canadian friend and of other children like them. Kilometre after kilometre, mile after mile, to the finishing line. With no effort.