#SalvemosARafita: 100 days for Zolgensma!

I am helping to raise funds for Rafita to pay for obtaining the treatment he deserves. All donations will be distributed  directly to Made & Felipe for Rafita's treatment and care. Please take the time to read their story below and support however you can!

Hello friends,

We are Made & Felipe, Rafita´s parents.

In 2020, we received the greatest blessing when we found out we were having a baby boy! Our wishes of having a family were answered! Our pregnancy was difficult to navigate during the lockdown, but together the three of us remained strong. Our beautiful baby boy was born on October 21st, 2020! 

A few days after Rafa was born, aunt Carola - who is a pediatrician- observed that our baby displayed symptoms of hypotonia. This concerning diagnosis led us to perform many tests over several days. November 7th we received the heartbreaking news that Rafa suffers from Spinal Muscular Atrophy (SMA) type 1, one of the most aggressive and serious forms of this disease.

SMA is a autosomal recessive neurodegenerative disease. This diagnosis carries an average life expectancy of only 2 years. Thankfully, with the cutting-edge treatments available today, there is an option that may substantially improve the quality of life and survival. This treatment is ZOLGENSMA, however, it is the most expensive medication in the world...it would cost us $2.1 million dollars.

This amount is unaffordable for any family, and yet this is not the only challenge we face. ZOLGENSMA must be administered in the early stages of SMA to be efficient to patients. Timing is so critical that this medication will not be sold to patients over two years old. That is why we need ZOLGESMA as soon as possible. His best chance would be to administer this drug before Rafa reaches 100 days old.

This diagnosis has been the most devastating and heartbreaking news for us. However, we will stand up and fight everyday because our dear son needs us. Rafa is fighting everyday to survive and we will do everything possible for him. We cannot do this on our own, so to save Rafita´s life WE NEED EACH ONE OF YOU to get ZOLGESMA and make this miracle happen.

Thank you in advance to all of you for your support and contribution.

Madeleine, Felipe y Rafita.

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Organizer and beneficiary

Joaquin Niemann
Jupiter, FL
Felipe Calderon

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