“Il sorriso di Giada” (Giada’s smile Association) and her mother’s strength: together to raise awareness about migrating epilepsy during infancy

Today we want to tell you the story of Giada, a 10-year-old girl affected by a really rare disease, diagnosed when she was only a month and a half old: migrating epilepsy of infancy. To make you understand it, here is Dr. Coppola’s definition, who described it for the very first time in 1995 and again in 2009.

It’s an epilepsy syndrome classified by the International League Against Epilepsy (ILAE) as epilepsy syndrome with onset during early infancy in 2001 (Engel J.J., 2001) and as recognised syndrome in 2006 (Engel J.J., 2006). In 2010 it was renamed by the ILAE Commission Report on Classification and Terminology (Berg et al., 2010) as “Epilepsy of Infancy with Migrating Focal Seizures”. This definition highlights the two distinctive elements: beginning in the (early) infancy and the “migrating” characteristic of the crisis.

According to the original description, it is characterized by the appearance in the first 6 months of polymorphic partial crisis (focal). They have a strong drug resistance and gradually a progressive deterioration of the neuropsychological and motor functioning occurs. In most children, it is associated to a lack of growth of the head circumference.

Giada’s disease brings her to have a tetraparesis and a psychomotor retardation.

Her mother Pamela heard about the Hyperbaric Centre of Ravenna when Giada was just 3 months old and she has followed us over the years on our Facebook page.

In February this year she started her therapeutic pathway. I had the opportunity to meet both Giada and Pamela at the Centre. As their case manager, I described them what would occur through the interdisciplinary pathway.

After just 2 weeks, her family noticed great improvements. Pain relieved and her mobility improved as well. Indeed, by turning her into a prone position, a motor response occurred: Giada tried to raise the head.

The therapeutic pathway consists of 2 weeks of therapy nearly every 3 months and the goals to achieve are:

  • Improve sensory receptors functionality and afferents of the sensory-motor system.
  • Help rehabilitation to improve posture control and encourage psychomotor development.

At the Hyperbaric Centre of Ravenna, Giada is followed by a physiotherapist and once a week she takes swimming rehabilitation.

Giada enjoys her family, parents and friends’ constant support; however Pamela often encountered many difficulties during these years because disability is not always helped and understood.

This is the reason why she founded the Onlus Association “Il sorriso di Giada” (Giada’s smile). It consists of a group of volunteers that work together with passion and commitment by organizing workshops dedicated to children with disabilities and their families but also open to children who don’t suffer any disease.

The main goal is to place them side by side to make them fully aware of both problems and difficulties that children with disabilities have to face every single day, in order to create an environment of cooperation and sharing against prejudices of the society we live in.

 By Giusy Durante, Nurse of the Wound Care Centre of the Hyperbaric Centre of Ravenna

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