The story of Erfan
I was born in 2006 in Tehran-Iran. I stopped growing in the first year of my life. The doctors sent my genetic test taken from my wrist to Germany and the result was MPS Type 4. There was no treatment and management; therefore they started with growth hormone injections. But later my doctor advised to stop because of malformation of my body skeleton. At the age of 4, I had spinal scoliosis surgery. In 2010, I was under cervical surgery as well . Afterwards I was advised to join Ergo therapy and physiotherapy sessions 4 times per week and the cost was so high that I just can make it in 2 sessions. My family could not afford and still the same. My father sold his camion to cover my expenses .
Last year my heart and respiratory system were afflicted, (pulmonary infections, cervical instability, and valvular heart disease). I went into coma and now I am breathing with oxygen and NIV. Later I could not walk while I had walking ability since 2 years old like any child and it lasted at the age of 9. Now I have to use wheelchair.
I was also emergently advised to receive enzymes about 12 vial but due to lack of them, I just receive 9 vial which is very low amount for me with 34 Kg weight.
I am studying at rehabilitation school in Tehran and am an honored student but the problem is I cannot write too much since I get tired very soon, for my muscles have become so weak. My mother helps me with writing and even eating.
I wish MPS children and young adults to be brave and fight with all their might. Never give up! and God cares for them and their parents. Wish for a certain treatment with access to orphan drugs against MPS rare disease.