Myla's Mission 5K/UTV ride is May 18

May 14—GREENSBURG — The seventh annual Myla's Mission for Sturge-Weber Research and Awareness 5K and UTV/Jeep ride is scheduled for Saturday, May 18, at Lake Santee's main beach.

Over the past five years, Thomas and Molly Speer have raised more than $80,000 for the Sturge-Weber Foundation in honor of their daughter Myla, who was diagnosed with Sturge-Weber Syndrome shortly after her birth.

Myla was born with a port-wine stain on her forehead, but the family didn't learn about Sturge-Weber Syndrome until she was 8 months old.

Sturge-Weber Syndrome is a rare malady affecting the development of certain blood vessels supplying blood to the head, causing abnormalities in the brain, skin, and eyes from birth. Its three major features are a red or pink birthmark called a "port-wine" birthmark, a brain abnormality called a leptomeningeal angioma (cerebral malformations and tumors), and increased pressure in the eye (glaucoma).

These features vary in severity and not all individuals with Sturge-Weber Syndrome have all three.

Most people with Sturge-Weber Syndrome are born with the port-wine birthmark, which is caused by enlargement of small blood vessels near the surface of the skin. Port-wine birthmarks are typically initially flat and can vary in color from pale pink to deep purple. In people with Sturge-Weber Syndrome, the port-wine birthmark is most often on the face — typically on the forehead, temple, or eyelid — and is usually only on one side of the face, but can be on both sides. Over time, the skin within the port-wine birthmark can darken and thicken.

This abnormal formation and growth of blood vessels within the two thin layers of tissue that cover the brain and spinal cord can affect one or both sides of the brain and impair blood flow in the brain, often leading to loss of brain tissue and deposits of calcium in the brain below the affected areas. This loss of blood flow can cause stroke-like episodes, often involving temporary muscle weakness on one side of the body, vision abnormalities, seizures, and migraine headaches, usually beginning at age 2 years.

The seizures usually involve only one side of the brain, during which the port-wine birthmark may darken and individuals may lose consciousness. People with Sturge-Weber Syndrome have varying levels of cognitive function, from normal intelligence to intellectual disability. Some individuals have learning disabilities with problems focusing similar to attention deficit hyperactivity disorder.

In affected individuals (usually only 1 in 20,000 births,) glaucoma typically develops either in infancy or early adulthood and can cause vision impairment. In some affected infants, the pressure can become so great that the eyeballs appear enlarged and bulging.

Individuals with Sturge-Weber Syndrome can have tangles of abnormal blood vessels in various parts of the eye, usually developing in the network of blood vessels at the back of the eye, and occurs in about one-third of the victims. This tangle of vessels can cause vision loss and usually occurs on the same side of the head as the port-wine birthmark.

Myla loves to play dress up with her dolls and being with her family.

She does well with her doctors if she knows they are just coming in for a general checkup. It's only when they have any sort of gloves or white coats on she gets extremely anxious.

Her seizures are always changing, but the Speers are learning to navigate the changes she goes through.

"That is to be expected," said Molly. "She's been through so much in her young life."

Registration for the 5K begins at 8 a.m. the day of the event with the walk/run starting at 9 a.m.

Registration for the UTV/Jeep ride begins at 11 a.m. and participants will take off at 12:30 p.m.

For more information about the event or to register, go to www.mylasmissionsws.com/.

Contact Bill Rethlake at 812-651-0876 or email bill.rethlake@greensburgdailynews.com.