Paige Nues of the International Rett Syndrome Foundation explores the broader effect on a patient’s family members and caregivers.
Paige Nues: To love somebody with Rett syndrome as a parent, as a grandparent, as a cousin, as a sibling, or as an aunt or an uncle will transform you in ways that you never imagined. To see somebody so vulnerable and so trusting is quite a transformative experience. One of the things that we commonly say in the world of Rett syndrome is, we thought that we would have to teach our child about the world but, in fact, we have to teach the world about our child because they are nonverbal, don't have a lot of motor skills, but have a lot of spunk and a lot of attitude. It is quite a joy but it's also one of great heartbreak because our children are vulnerable and are dependent 24/7 for all aspects of their care. It's not degenerative. Our children will live from early childhood with full-blown symptoms of Rett syndrome through adulthood. It impacts our ability to work. It impacts our ability sometimes to leave the house. It impacts our ability to sometimes enjoy the things that many people take for granted such as going to a party. The ability to keep up your job and be able to go off to work can become very unstable. We don't know from day-to-day if she is going to be able to make it to school or if he's going to be in the care of someone who can get the nutrition and hydration into their body in the way that they need. If it's a school holiday, you can't go to work because there really isn't childcare readily available oftentimes for somebody with Rett syndrome. If they get an illness and can't go to school, you must stay home with them.
Suppose you get the same cold or flu that your child with Rett syndrome has, and you can't afford to stay in bed because if you're not there to help them get out of bed or get the things that they need, they can't do them for themselves. Loving somebody with Rett syndrome is a great joy but it also is a chronic sorrow, and it is something that never takes a break. We also often say that Rett syndrome never sleeps and therefore neither do we. We mean that a little bit tongue-in-cheek because sleep disorder is part of Rett syndrome. Though, as parents, we are the most important piece of durable medical equipment in our child’s life. We need to be there to make sure that they get to appointments, appointments are made, or that medications are refilled and that medications are given. If we are not there to make sure that she gets up, and she gets bathed, and dressed, and fed, it won't happen no matter what age the individual with Rett syndrome is. It is an intense journey, but it is well worth it. The joys and the returns of smiles and the brightness of their eyes when they are understood and loved far outweigh the burden of care. Nonetheless, it's still tough.
Transcript edited for clarity.