You know the saying about how to eat an elephant? One bite at a time. Whenever you are faced with something monumental, a task or challenge that feels too big to manage, you must break it down into smaller pieces. This has resonated with me recently. My husband and I…
Parenting a Sanfilippo Child – a Column by Kelly Wallis
Back-to-school time is upon us. While some families are looking toward openings around Labor Day, others are already scrambling to get necessary clothes and supplies and adopt new routines. Kids will be meeting their new teachers and making new friends. Older students might be starting various extracurricular activities and bonding…
My daughter Abby has Sanfilippo syndrome, which is rare, genetic, and terminal. We’ve lived with the condition for eight years now, since her diagnosis in 2017, at age 22. In some ways, strangely, I feel less capable of handling this awful disease now than I was eight years…
Parenting children is challenging. Parenting children with special needs or developmental delays is even harder. You must consider many factors: age, ability, environmental and situational dynamics, setting, time of day, and more. My oldest daughter, Abby, was immediately admitted to the neonatal intensive care unit after she was born and…
March is here, my least favorite month. My mother passed away on March 29, 2020, and I’ve hated this month ever since. Because she passed at the end of the month, I’m forced to anticipate this anniversary for almost all of March. My mother was the most loving, caring, and…
Being a parent is one of the joys in my life. I fiercely love my daughters and cannot imagine life without them. My youngest daughter, Emily, is 27 and teaches first grade. She’s the funniest person I know, and we have such a special relationship filled with laughter, prayer, and…
The emotional roller coaster that accompanies Sanfilippo syndrome can be bumpy at times, and I’ve been feeling the ups and downs more strongly lately. I’m speaking of my extremely volatile emotions when caring for my daughter Abby and accounting for her needs. There’s the ebb and flow of happiness…
Have you ever sat on a plane stuck on an airport runway for an extended period of time? In that scenario, there’s a delay of some sort, and you just have to sit there and wait it out. There’s nothing you can do about it. Maybe it affects your emotions,…
My oldest daughter, Abby, has Sanfilippo syndrome, a rare, genetic disorder sometimes referred to as “childhood Alzheimer’s.” This horrible disease has taken away almost all her speech and much of her cognitive ability. Her motor skills are also worsening, and she needs help when walking to ensure she…
My 28-year-old daughter, Abby, has Sanfilippo syndrome. It’s a rare, terminal, genetic disease that is often referred to as childhood Alzheimer’s because it affects the body similarly. Most children with Sanfilippo pass away by their midteens, so the disease certainly takes its toll on the body quickly. However,…
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- Tralesinidase alfa ERT for Sanfilippo type B children put on fast track
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