Francesco’s story began a year ago when he was just 6 months old. He
was born at 36 weeks to his proud, loving parents Iowa and Dominic
and big sister Isabella. All appeared well until they observed his
lack of development. Tests confirmed every parent’s worst fears that
there was indeed something wrong with Francesco. He was diagnosed
initially with hydrocephalus (fluid build up in the brain) but in a
matter of hours, the diagnosis given to his parents was
Lissencephaly (smooth brain), a malformation of the brain causing
severe mental retardation and poor control of movement. Their life
as they knew it would never be the same. They began educating
themselves and entered the world of raising a child with special
needs. Their journey began with the Connecticut Birth to Three
Program, Project Interact, Inc., which strengthens the capacity of
families to meet the needs of children with developmental delays
and/or disabilities. Here they learned of the Molly Ann Tango
Memorial Foundation, established in 2004 to give guidance and
financial support to families of children with special needs. Iowa
contacted the foundation through its founder Todd Tango and through
conversations realized Francesco’s diagnosis closely matched that of
Todd’s daughter Molly. No one could have known at this point what
this connection could mean for their lives.
This past spring Iowa
and her family desperately wanted to attend a Lissencephaly
conference in Indiana. They wanted to meet other families and learn
from the experts how best to care for Francesco. Like so many
families raising children with disabilities money was tight. But
knowing how important an event such as this would be they made a
request through the foundation. Their need was granted and off they
went in search of answers and support. Iowa describes the conference
as a life altering event. Here they met Dr. Dobyns, the head
pediatric genetic neurologist doing one of the only research studies
on Lissencephaly and other rare brain malformations. After meeting
with Francesco and his family Dr. Dobyns strongly felt that
Francesco’s diagnosis was mild Cerebellar Vemis Hypoplasia
(underdeveloped cerebellum). Had they not attended this conference
they might not have known this for quite some time. Francesco’s
parents feel that they have more hope and can better understand him
and his needs. They thanked the foundation by writing: “Helping my
family finally put the right kind of tears in my eyes…happy ones.
Thank you Molly up in heaven for still making people smile!”
