Beautifully Different

A Project Celebrating Differences and Triumphs

Layla is Beautifully Different

Meet 8 year old Layla. When Layla’s Mom was pregnant with her she suffered a perinatal stroke. A perinatal stroke is a stroke that happens in the womb. A stroke can occur before birth, in infants, children and young adults. The risk of stroke is highest in the first year of life and peaks during the perinatal period (a few weeks before and after birth). Sixty percent of infants with a stroke diagnosis have specific symptoms such as recurrent focal seizures in the first three days of life. (Children’s Hemiplegia and Stroke Association) Layla’s stroke affected the left side of the brain and is complicated by seizures.

Layla is Beautifully Different!

The Diagnosis

Layla was diagnosed at 4 months. The stroke left her with right side weakness, speech delay, and difficulty comprehending situations. A month after she was diagnosed, at age 5 months, she developed seizures and a condition known as hypsarrhythmia. Hypsarrhythmia is a disorganized, chaotic pattern of brain waves that occurs in children with infantile spasms (IS) but not in other seizure disorders. Layla was in the hospital for two months because no medication could control the seizures and IS. The only option left was brain surgery to remove the damaged areas with a low survival rate. Her neurologist worked night and day to find an alternative. She did, ACTH injections. Within a week, she was improving and within a year the hypsarrhythmias stopped!  Layla continues to have seizures which have required hospitalizations but she is controlled now with medication.

A Day in the Life of Layla

Layla has therapy almost everyday. She has to work really hard, sometimes after a long school day. Unfortunately, she doesn’t get to have many after school activities or play dates but she has an amazing group of therapists. They make their sessions not only productive but fun and entertaining. Layla has limited function of her right hand and she wears a brace on her right leg during the day and a splint with a knee brace at night. She can’t run as fast as other kids or play on the jungle gym but she has a mean tennis swing!

Spunky. Loving. Determined.

Despite and because of all Layla has been through, she is a very strong, determined and empathetic person. Her therapists have said she will be CEO of a company one day with her great organizational skills and perseverance. Layla also has the biggest heart ever! She cares for everyone, young and old. She is the greatest helper around. She loves to clean (a parents dream!). Layla has a great memory of names, numbers and schedules. Her nickname is the “family memory stick”. Layla is such a beautiful and amazing little girl!

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