Help Save the Life of Our Beloved Daughter, Maria Alice

Maria Alice needs your help to access the most expensive medicine in the world - and with it, a chance to live.

On September 13, 2024, our daughter Maria Alice was diagnosed with a rare condition called Spinal Muscular Atrophy (SMA) Type 2, a serious disease that affects approximately 1 in every 10,000 children. Since that day, our lives have become a daily fight for her survival.

We urgently need to raise £1.79 million for Maria Alice to receive the medication Zolgensma, which represents a real opportunity to slow the progression of the disease and preserve vital functions. This treatment must be administered before Maria Alice turns 5 years old, as after this age the damage may become irreversible. Time is critical.

Thanks to the support of NGOs and generous people around the world, we have already raised over £937,000. However, we still need approximately £853,000 to reach our goal and give Maria Alice the treatment she desperately needs.

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How We Discovered SMA

My name is Alessandro. I began to suspect something was wrong when, after Maria Alice's first birthday, she was unable to sit up on her own, crawl, stand, or support weight on her legs. Shortly after, she also lost the ability to walk.

Maria Alice is my first and only child. Despite losing these movements, she remained alert, loving, and always smiling. However, I noticed she often refused food even when she was hungry. Later, we understood this was due to difficulty swallowing, which caused her to become increasingly weak and underweight.

After several medical exams, we received the diagnosis: Spinal Muscular Atrophy (SMA). It is a serious and progressive disease. Without proper treatment, statistics show that a large percentage of affected children do not survive their early years.

Hospitalizations, Challenges, and Strength

Maria Alice had to be hospitalized because she could no longer feed herself safely. She began choking even on liquids, and doctors were forced to insert a nasal feeding tube. At first, curious as always, she tried to pull the tube out.

After a few days, she was discharged and slowly began adapting to this new reality. Unfortunately, we still face judgmental looks and hurtful comments, but we have learned to focus on what truly matters: Maria Alice is alive, surrounded by love, and fighting every day.

Even through all of this, she never stopped smiling. Maria Alice teaches us daily the true meaning of strength, hope, and faith.

Zolgensma - the Most Expensive Medicine in the World

Zolgensma is an innovative treatment that can halt or slow the progression of SMA, provided it is administered before irreversible neuromuscular damage occurs. The medication works by replacing the function of the SMN1 gene, which is essential for the survival of motor neurons.

Without sufficient government support and without sponsorship from public figures, we decided to share our story online in the hope of reaching compassionate people willing to help.