One family’s experience with music therapy and Sanfilippo Syndrome.
Sanfilippo Syndrome is a very rare genetic condition and metabolic disorder. It is often referred to as childhood dementia/Alzheimers. Sanfilippo affects 1 in 70,000 children, and most children diagnosed with Sanfilippo do not even reach adulthood. Sanfilippo primarily affects the brain by filling the brain cells with waste that the body is unable to break down and process. As the waste builds up, the brain becomes more and more damaged, causing symptoms like hyperactivity, memory loss, shortened attention span, disordered sleep, loss of speech, intellectual disability, cardiac issues, seizures, loss of mobility, and death.
Right now, there is no known cure or treatment for Sanfilippo syndrome, but scientists and researchers around the world are working hard to find effective treatments and hopefully, a cure.
Two of Sanfilippo syndrome’s symptoms are memory loss and lowered attention span. Music therapy can be used as a memory aid for people with Sanfilippo syndrome. Putting important details, like a phone number or home address to a tune, can help children with Sanfilippo syndrome remember valuable information. Music can also be used as a tool to teach and encourage children with Sanfilippo syndrome important tasks, like brushing their teeth or doing physical therapy. Music is a valuable tool to preserve memory for Sanfilippo patients.
Music therapy is also helpful in combating the shorter attention span of children with Sanfilippo syndrome. This is because music gives children (with attention difficulties that come with Sanfilippo syndrome) a structure in which to interact with each other and with their peers. Music has helped people with Sanfilippo syndrome learn important skills like sharing, taking turns, and contributing to group interactions.
Specific songs have notably helped build social skills in Sanfilippo patients, like making eye contact and communicating both verbally and nonverbally. When combined with speech therapy, music has had a huge impact on the communication skills seen in children with Sanfilippo syndrome.
Sanfilippo syndrome heavily impacts the physical abilities of those affected. Music therapy can also positively change the physical abilities of young Sanfilippo patients. Music therapy has been used to help patients adapt to their physical limitations and help them with walking and performing other forms of physical therapy. Music works by providing kids with Sanfilippo syndrome a steady rhythm and beat to move their bodies to.
Kelly Wallis’ daughter Abby has Sanfilippo Syndrome. Abby is 24 years old and has been struggling with the symptoms that come along with Sanfilippo syndrome for most of her life. Abby was once able to participate in activities like Taekwondo and the Special Olympics, but because Sanfilippo syndrome is a progressive disease, she is no longer able to do those things. Losing her cognitive function and speech has caused Abby to lose all semblance of independence, social and physical awareness, ability to connect with others, and, in some instances, her interest in life. While her disease has taken most of her favorite pastimes and activities away from her, music remains a huge part of her life.
Music makes a huge impact on Abby’s life with Sanfilippo syndrome. At 24, her speech and vocabulary has been limited to about five-ten words, but when she listens to music, she becomes able to use more words by singing along to her favorite songs. Kelly happens to be a music therapist, so she has used her occupation and firsthand experience to observe just how important music can be to people and families affected by Sanfilippo syndrome.
Music is unique in its ability to heal because of how it interacts with the brain. Research has shown that music activates the whole brain, both the left and the right hemisphere, and creates much more brain activity than if the brain were to remain at rest. Due to this full brain activation, Abby is able to use parts of her brain that have not been damaged as badly, to compensate for the parts that have been more heavily affected by the disease.
Kelly and her husband like to sing to Abby for several key reasons. For one, if they can sing to her, they can control the pace at which Abby is able to absorb the music. The slower they can make the lyrics, the more likely Abby will be to absorb, and in turn, comprehend what they are singing. This allows her to sing along and participate, something she is not always able to do in day to day life.
Abby’s parents also like to sing to her because then they can stop at the last one or two words and give Abby the opportunity to fill in the final words on her own. This activates her memory and cognitive ability in a unique way. And it works! Kelly says that Abby will often be able to finish the songs when she is interacted with in this way, and that she and her husband do not see the same positive results when they just speak phrases to her and leave the final words up to her.
Above all else, music makes Abby happy, and brings her joy. In a life endured with devastating symptoms and little self-satisfaction, anything that brings Abby joy is a win for Kelly. As a music therapist, Kelly believes that anyone can benefit from adding music to their life, not just those with illnesses like her daughter’s.
Music can be energizing, mood boosting, motivating, and distracting. It is undeniably an incredibly powerful tool for all humans, regardless of health or ability.