We are in a race against time to save little Luca’s life. At infancy Luca was diagnosed with a very rare and fatal genetic disease called Acid Sphingomyelinase Deficiency (ASMD), also referred to as Niemann-Pick Disease. Luca has Type A/B, characterized by:
- an enlarged liver and spleen
- loss of muscle tone
- failure to thrive
- possibility of neurodegeneration
Recent advances in the medical field have sparked new hope in our hearts for Luca’s survival. Unfortunately, the Olipudase Alfa medication from Sanofi, used in the enzyme replacement therapy that Luca needs, is only available in the USA. The medication needs to be imported and this has an immense financial impact on us as his loving parents. Due to the poor ZAR/$ rate we are unable to afford it and consequently save our child. He will be dependent on medicine for the rest of his life and @R184 000 per month (approx. R 2.2 million per year) we need all the help we can get to save Luca.
We will never give up hope and we long for the day that we can watch our little Luca run around and kick a ball with his siblings, go to school and hear him say he loves us too.
We BELIEVE this day will come. In the meantime, we need to buy Luca time and give him a more comfortable life. With your help, we know we can win this war. Our hope lies in GOD giving us the means to provide. Hope is our best medicine.
With endless gratitude,
Marisa and Christiaan Barnard