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HUNTER SYNDROME

Desislava’s Story

Desislava’s son Paul was diagnosed with Hunter syndrome, also known as MPS II, when he was two years and six months old. Here’s their journey with Hunter syndrome.

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We are Desislava and Paul. We fought for treatment.

Parenting a child with a rare disease can understandably be a struggle. Desislava is mother to Paul, who is 15 and living with Hunter syndrome (also known as MPS II). She tells us about the mixed emotions she experienced when Paul was diagnosed and why she’s on a mission to help other families in similar situations.

Desislava's Family

Advocating for mucopolysaccharidosis

At the time Paul was diagnosed, the shock and despair was so strong that it was hard to find the strength to move forward. The only thing that kept me going was that the thought that Paul needed me to help him cope with the difficulties ahead. After the initial shock came feelings of faith and the hope.

In Bulgaria, cumbersome administration procedures and polices led me to set up the Mucopolysaccharidosis Association in June 2007. My aim was to connect affected families, so that we could all support and help each other, sharing problems and experiences and holding on to hope.

Desislava's Home

Taking the search for treatment overseas

My husband worked overseas in Greece for many years to support us, because looking after our son has meant that I cannot work. We discovered that there was treatment for MPS II available in Greece and that our son was covered by insurance.

So in December 2008 we were taken into the hospital in Thessaloniki for check-ups. After that, we got all the necessary documents together and went before the committee that grants money for treatment. I really didn’t dare to believe that we would be admitted, given the experiences I had at home in Bulgaria. To my great surprise, two weeks later we got a positive call. Paul had been granted treatment. They were very accepting of our Bulgarian child. Paul was treated in Thessaloniki from 2009 to 2012. He also underwent rehabilitation, and was helped by a speech therapist.

In September 2012 the treatment we needed finally became available to us in Bulgaria, though we still had a long battle to get it and lots of difficulties to overcome. Unfortunately, many children did not survive the wait. That was a great sadness.

“Our children may have small bodies, but their courage is huge. They bear their fate with incredible dignity.”

Desislava's Hunter Syndrome Story

HUNTER

Desislava

Nothing will stop us from fighting for a decent life for our children and families. We still come together to reassure each other and try to stay positive in difficult times. Talking openly about our fears with people who really get it is invaluable. Our children may have small bodies but their courage is huge. They bear their fate with incredible dignity.

There’s lots more to tell you about Paul’s condition:

Learn more about Hunter syndrome

Name: Desislava

Parent of: Paul, a Hunter syndrome (MPS II) patient

Location: Sliven, Bulgaria

Diagnosed:Paul was diagnosed when he was two and a half years old.

To learn more about Paul’s rare disease, please visit:

huntersyndrome.info

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Nothing will stop us from fighting for a decent life for our children and families.

Desislava's Hunter Syndrome Story

HUNTER

Desislava

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