We urgently need assistance to help pay for Sanel's medical bills and to raise funds for enzyme replacement therapy.
Sanel, born in 1985, was diagnosed with a rare genetic disease, called Niemann-Pick. This disease is also referred to as ASMD (Acid sphingomyelinase deficiency).
Niemann-Pick affects the body's ability to metabolize fat (cholesterol and lipids) within cells. These cells malfunction and, over time, die.
Niemann-Pick has negatively impacted Sanel's health in multiple ways:
- an enlarged liver and spleen.
- affecting her lung function.
- infiltration of the bone marrow leading to severe back pain.
- lowered immunity.
- major depression.
All of the above health issues has placed enormous financial pressure on us, due to expensive medical aid and treatment not covered by the medical aid.
Due to her poor health she also does not qualify for life insurance and temporary or permanent disability cover.
We recently were made aware that there is potential treatment for her condition, namely Olipudase Alfa. This medication is used in enzyme replacement therapy.
Unfortunately this medication is not available in South Africa. It would have to be imported, adding to the cost. The cost of the medication is estimated to be $125000 per annum.
With the availability of Olipudase Alfa we know that we can give Sanel a fighting chance to overcome this disease and to be a mother for 4 year old Lisbe.
Your donation could potentially save a life.