Pilot Club members create special gift for autistic youth

Members of the Pilot Club of Andalusia recently came together and made a special gift for a young 11-year-old girl in The Bronx, New York, who was diagnosed with Rett syndrome.

Elsa plays with a fidget blanket given to her by the Pilot Club of Andalusia.

Eric Lidh’s granddaughter Elsa Lidh received a fidget blanket from the Pilot Club. Eric’s wife Bobbi is a member of the club. A fidget blanket is a lap-size quilt that provides sensory and tactile stimulation for the restless hands of someone with Alzheimer’s or other forms of dementia such as attention deficit disorder or an autism spectrum disability.

“Many people in Andalusia know my husband Eric as their favorite speech or drama professor or as the character Drosselmeyer in the Andalusia Ballet’s ‘The Nutcracker.’ When both of our spouses passed away six years ago, we reconnected through grief and have now been married for two and a half years. Eric was married 57 years, and I was married 43 years, so together, we bring 100 successful years to our new union,” Bobbi said.

Rett Syndrome Awareness Month is celebrated each year in October. During this time, the International Rett Syndrome Foundation invites others across the world to help increase awareness of the genetic disorder. Eric’s youngest son Todd and his wife Jessica are the parents of four children: Elsa, August, Alistair, and Winona. According to Bobbi, Elsa had a perfectly normal birth in 2012. In 2015, she was notably delayed in her physical and cognitive benchmarks, which led to an initial diagnosis of autism.

“She wasn’t playing, speaking, or interested in things like typically developing children. However, Elsa baffled the professionals trying to assess her, help, and teach her. She was consistently inconsistent in fitting into any well-defined box. Todd and Jessica pursued genetic testing for Elsa, and through this, she was diagnosed with Rett syndrome. Specifically, Elsa had one uncertain variant in the MECP2 gene,” Bobbi said.

Elsa’s current condition is complicated as she matures and grows up. Now in the seventh grade, she faces many limitations, including walking. She must be physically supported most of the time and has limited speech.

According to RettSyndrome.org, Rett syndrome is a rare non-inherited genetic neurological disorder that affects 1 in 10,000 females (and even more rarely in males) and begins to display itself in missed milestones or regression at 6-18 months. Rett syndrome leads to severe impairments, affecting nearly every aspect of life: the ability to speak, walk, eat, and breathe easily.

“For Todd and Jessica, this description and diagnosis seemed to explain some of Elsa’s communication struggles. She was constantly stroking her finger on her face and had poor motor planning and depth perception issues,” Bobbi said.

According to the National Organization for Rare Disorders, affected individuals may exhibit late motor impairment after the age of 10. Most affected individuals may develop dystonia, a condition characterized by sustained muscle contractions associated with abnormal, uncontrolled movements or postures. Approximately 85-90 percent of affected people may experience growth failure and muscle wasting that worsens with age. Many people with Rett syndrome live well into adulthood, although they may require constant care and supervision. However, there is an increased risk of sudden death in people with Rett. Approximately one-quarter of deaths are sudden and unexpected.

“Elsa does have autism. Elsa does have Rett syndrome. Elsa has a one in ten thousand chance. She is our Elsa, and we love her. Elsa’s plight coupled with a desire to serve my new community became a launching point for me in joining the Pilot Club of Andalusia. Our club’s primary focus is to promote awareness of brain-related disorders and help with local charities,” Bobbi added.

The Pilot Club’s motto “Do More, Care More, and Be More” exists as one of the many ways it makes an impact in the local community.

“Our club made a beautiful apron for our granddaughter Elsa, and I am proud to be part of an organization that strives to meet the needs of the vulnerable,” Bobbi said.