Thanya

The Prashanth family remembers the proud, ecstatic emotions they felt following the birth of their healthy baby girl. At just 10 months old, they moved as a family from India to Germany to start the beginning of what would surely be years of health, love, and laughter with their new daughter. It was an adjustment moving from their home country to Germany, one that especially seemed to impact their baby girl, who, they noticed, wasn’t crawling or walking in their new home. They went to a local physician, who reassured them that everything was fine and that they simply needed to come back in another 6 months and re-evaluate. 

Six months later, the family was still puzzled. At this point, there was still no progress in their baby girl’s crawling, and even physiotherapies appeared to have no beneficial impact on her condition. Even more confounding, their daughter’s blood tests showed no abnormalities, only adding to the anxiety and confusion of trying to find an answer. In an attempt to find some relief from the stress of their baby’s medical odyssey, the Prashanth family took a vacation back home to India. Surrounded by loved ones, their hope remained concrete. Surely, they would soon find an answer that would help easily resolve their worries. 

Shortly thereafter, their beloved daughter was diagnosed with Multiple Sulfatase Deficiency. Nearly two years later, on a seemingly appropriate dreary, rainy day in Göttingen, Germany. Reflecting on the fateful day of their daughter’s MSD diagnosis, the family remarked: 

“It just utterly floored us, and all of our hopes and beliefs took a hit. My first reaction when I heard about the diagnosis was to google MSD because we had no idea what Multiple Sulfatase Deficiency was. The first thing you see is “fatal,” which really hit me hard. You go unresponsive for a while, your mind isn’t working. You just don’t know what you believe anymore and don’t know if you were believing the right things all along. You almost don’t even believe it’s a real diagnosis at first… you’re in denial.”

Luckily for the Prashanth family, they met Dr. Lars Schlotawa and his team of world-renowned researchers, who have helped them navigate their daughter’s MSD diagnosis. 

“The first thing we realized once she was diagnosed was that we needed to bring her back to Germany because of the care we could receive for Thanya here, which was a hard decision we had to make. We try to protect our family as much as possible, so much so that they are completely unaware of what’s been going on with Thanya. It has taken a huge toll on us.”

The family has tried various therapies for their baby girl, yet they smiled as they recounted their daughter’s unbeatable love for music. It’s the memories of their beloved MSD warrior, wiggling and bouncing happily around to her favorite music, that keeps the family sustained. 

“We saw her doing things, we saw her active and happy, and now, at this point of time, you see how much she’s going through, and it’s like slow poison. It kills the parent more than it does the child, in my opinion,” her father stated. 

When asked what they wish was better for MSD families, the family was firm, “I know it’s not just MSD families out there struggling with genetic conditions like ours, but overall, the awareness is just so important, and I really wish there was more awareness around MSD specifically. Had we known that there was a possibility to diagnose my child earlier, that would have been something we would have jumped at. Unfortunately, the unawareness is what brought us on the diagnostic odyssey we went on with our daughter. I just hate to think that there are more parents out there who are unaware that their child may have MSD.”

Despite all of the challenges they have faced, the Prashanth family has never lost hope. 

“There is always room for hope, no matter how bleak the situation.  As important as it is to learn about the disease and run looking for solutions, it is more important to celebrate the child. From our experience, it is possible that we are so determined to save our child that we lose the precious little moments that make the child happy. Of course, you will still look for a cure, a remedy, or therapies, but we don’t let it cloud the celebrations of our children,” they said. 

One of their daughter’s favorite things is holding her parents’ hands and kissing them on the cheek. While MSD has changed their lives forever, the Prashanth family is committed to amplifying their daughter’s love. For them, hope and love is eternal. 

The family would like to thank Karthikeyan Radhakrishnan, especially for all his guidance, support, and expertise during this difficult time.

Written By Stephanie Schofield (Student Ambassador)