EMMA, THE MERMAID WHO WANTED TO BE A LAWYER
For Emma, every day is a conquest. Every minute she spends in the water is an unhoped-for moment of freedom. A moment to be treasured, and remembered when, once more, she’s bound to her electric wheelchair. If her feet were finned and her skin scaly, Emma would live in the water, like a modern mermaid! Only in the water will her muscles obey her will. Spinal muscular atrophy (SMA) struck while she was still very young, and she soon found a trusted friend in her electric wheelchair. It was only during a holiday at a campsite with her parents that she discovered the sea, the pleasure of floating on the surface of the water, the rediscovery of a passionate attachment to life itself.
Her strength of will and desire for independence have turned her into an example for all children born with this disease. “When I grow up, I want to become lawyer”, says Emma, with great determination. She’s just 13 years old, but she has the courage it takes to look to the future and to recognise, as a priority in her life, the need to defend the rights of the disabled. Telethon’s place is here − alongside the many young heroes and heroes of the world, like Emma. Telethon has set aside about 4,600,000 euros and has funded 36 research projects into spinal muscular atrophy, which is one of the principal genetic causes of infant death. SMA is a neuromuscular disease that leads to the gradual death of motoneurons, the nerve cells of the spinal cord that tell muscles what to do. Thanks to a small donation to Telethon, you can help Emma as she grows up and studies to become a lawyer. Who knows? Perhaps she’ll win a medal, too (like her very own idol, sports star Federica Pellegrini).
LIKE EMMA, OUR RESEARHERS REFUSE TO GIVE UP. FOR PEOPLE LIKE EMMA.
SMA appears in about 1 newborn child out of 10,000. It is the most widespread genetic cause of infant mortality. There are three types of SMA. Type 1 is the most serious condition, impacting about 50% of patients. There is no definitive cure yet, but we have learned more about the disease’s basic mechanisms over the last few years and many studies are being conducted to seek out possible treatments for intervention on various levels, whether genetic or designed to curb motoneuron loss.
For people like Emma, Telethon is a beacon in the night. There is no cure, but our unflagging commitment has led to the creation of structures that can provide psychological and physiotherapeutic care, and muscular exercise. The people running the treatment centres always want their patients to know that they themselves are the absolute priority!