Learning to Find Joy in Life as a Sanfilippo Sibling

The four years since my sister, Abby, was diagnosed with Sanfilippo syndrome have been a journey, to say the least. She has lost most of her speech and will continue to lose basic life skills as the disease progresses. Our family has had to adjust to a new normal knowing that this disease will take my sister’s life.

One of the most difficult parts of readjusting after a diagnosis like Abby’s was recognizing good days. After receiving the news, it was difficult to find joy. It was similar to when I lost my grandmother last year. Any happiness felt forced. With time, it got better, but I had to learn to change my mindset.

When someone you love is diagnosed with Sanfilippo, it’s easy to allow the prognosis to hang over your head in times of joy or celebration. Since Abby’s diagnosis, birthdays and holidays just haven’t been the same. I find myself sitting around the dinner table at Christmas or singing happy birthday to a family member and wondering who will be there for the next one.

This is still, and probably always will be, a struggle. As a sibling, I wish my sister could tell me what she’s thinking and how I can help her. As a daughter, I am hopelessly trying to protect my parents’ hearts from pain. I tend to take it upon myself to make sure my family is still able to laugh and enjoy life, regardless of what lingers in our future.

This is a heavy job for a Sanfilippo sibling. I have to protect my own heart from the different levels of grief that Abby’s condition causes, but I am also the type of person to make sure that others are OK. I take it upon myself to make any time I spend with Abby and my parents joyful.

We have our fair share of difficult conversations and heavy emotions, and as a Sanfilippo sibling, it’s easy to feel helpless. Sometimes all we can do is protect our family’s hearts.

It takes a conscious effort to enjoy time spent together, whether it’s a relaxing day at home or the joyful post-quarantine reunions that will happen in the near future. This will never go away. However, as we approach the four-year mark since Abby’s diagnosis, I’ve learned to recognize the value of joy in our lives. 

***

Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.