Parenting a Sanfilippo Child
— Kelly Wallis

My daughter Abby has Sanfilippo syndrome, a rare and terminal disease with no cure. Every year my husband, Jeff, my other daughter Emily, and I host a 5K walk/run in our hometown of Houston, Texas. We want to…

My daughter Abby has a terminal illness called Sanfilippo syndrome. This condition has stolen so much of Abby from our family. Witnessing her decline is extremely hard. It is difficult now to remember what Abby was like before her…

I am raising a terminally ill child, my daughter, Abby. This has caused many to call me a hero, warrior, or fighter, among other things. While these are flattering terms and to be taken as compliments, I do not…

My daughter, Abby, is 24 and has Sanfilippo syndrome, which will one day claim her life. I already feel like she’s gone, though. I had never even thought of the idea of grieving the loss of someone who is…

Parenting a terminally ill child carries emotional baggage. It can be subtle or sudden and feel like an extra weight to carry around every day. The feeling of bitterness particularly resonates with me and has developed over time.

Parents of terminally ill and special-needs children experience a multitude of emotions. Our feelings lie across a wide spectrum, and sometimes we feel many emotions at once. Each person’s reaction is different, too — no two parents are exactly…

This time of year is a good opportunity to take stock of the wonderful people in our lives. Here is my inventory of those to whom I am sincerely grateful. My husband, Jeff, is my constant. He is always…

Do you ever feel like your faith is being tested? Like God is trying to see how much you can take? I don’t think God is malicious and means to push us to our breaking point, but it feels…

Raising a special-needs child can be isolating. You think no other child is like yours, and other parents won’t understand the daily challenges you face. When I thought my daughter Abby had autism, I didn’t join a support group…

Children with Sanfilippo syndrome often have neurotypical siblings. These are rough waters for parents to navigate. You love them equally, but how do you adequately care for their differing needs? My oldest daughter, Abby, has Sanfilippo syndrome. Her…

People often don’t like talking about sad topics. They probably feel they lack adequate words. Most want to offer advice, or say something to make another person’s life better. But if you have experienced a sad event, you can’t…

My daughter Abby was diagnosed with Sanfilippo syndrome almost two years ago. It took a while to live with the shock of the diagnosis. Not long before she was diagnosed, I received the news that I had cancer, so…