By Guest Blogger Karen Litwack, LCSW
Jennifer Laston's The
Boy Who Loved Too Much: A True Story of Pathological Friendliness is an
educational and inspirational story about Eli, a young boy with Williams syndrome,
and the profound affect that this rare genetic disorder has on his life and the
lives of those closest to him. Eli’s mother Gayle is his primary caretaker. While
they love each other deeply, their relationship is constantly challenged by the
wide-ranging impact of Eli’s overly loving disposition and Gayle’s desire to
respond to the best parts of her son while trying diligently to help him master
the complexities of school and family relationships.
Williams syndrome is caused by a deletion of about twenty-six
genes from one strand of chromosome 7. About
1 in 10,000 individuals have Williams syndrome and may experience some of the
following symptoms:
- Heart defects due to loss of the elastin gene
- Unique facial characteristics, such as a small
upturned nose and full lips
- Short stature with pear shaped body type
- Mild to moderate intellectual disabilities
- A highly social and outgoing personality, which
leads to indiscriminate affection for loved ones and strangers
- Unique language and musical abilities
Williams syndrome is sometimes described as the "opposite" of autism because individuals with autism often have poor social skills but
stronger organizational, mathematical and special relations abilities. Autism is much more common than Williams syndrome, affecting approximately 1 in 68 people.
The book primarily focuses on Gayle’s role as a caretaker. Gayle
sees herself as a fighter and nonconformist, qualities that serve her well as
she battles for her son’s right to special education, specialized therapies and
inclusive social activities. Over time, the amount of energy and resources she
spends as a caretaker begins to consume her. As Eli matures, Gayle realizes
that she needs to care for herself in order to be there for her son. This is a pivotal
moment for Gayle, who isn’t sure how to create a life of her own with her
current responsibilities. The book concludes as Eli triumphantly graduates from
middle school. Gayle is proud of their accomplishments but also recognizes the
challenges that lay ahead.
As a social worker, I would recommend this book to anyone
involved in genetic services who has meaningful contact with patients and
families. It’s important for healthcare professionals to recognize when caregivers
can benefit from support services to successfully parent a child
with a complex genetic disorder such as Williams syndrome. Individual and
group counseling, organizational support (Gayle was active in the Williams Syndrome
Association), participation in online forums and even respite care can all help sustain the around the clock effort it takes to care for individuals who require physical and emotional support.
For more information about William syndrome, visit https://rarediseases.org/rare-diseases/williams-syndrome/ or speak to the Center's genetic counselor.
