Standing in a hospital, Sonya and Scott waited for the MRI results of their three-month-old baby, Dylan. “We did not have any concerns at Dylan’s birth,” said Sonya. But a few weeks later, when Dylan had difficulties feeding, his doctor found a more threatening worry.
“His doctor measured his head circumference and noticed a sudden increase in size. He said Dylan had hydrocephalus (a condition causing swelling in the brain).” Immediately, “we were shipped off for an MRI of his head to determine the cause,” said Sonya. “The results of [that] MRI would change our lives forever.”
That same day, Dylan was diagnosed with Vein of Galen Malformation, a rare congenital deformity affecting a large vein that forms deep within the base of the brain. Or as Sonya puts it, “A huge pouch of blood formed in Dylan’s head, taking up at least a third of the space in his skull.”
As a result, Dylan received seven embolizations — extremely risky interventions done to block off the tiny blood vessels and slow down the blood flow. “The doctor told us that night, Dylan would be fortunate to see his first birthday. They told us Dylan would never walk, talk or sit unassisted. At best, he may learn to use a communication device,” said Scott.
However, Dylan defied the odds.
Now at age seven, Dylan relies on his wheelchair to get around. Inside his home, which had to be renovated to make it wheelchair accessible, he uses a “Special Tomato” chair on wheels, a ceiling lift and ankle-foot orthotics to stabilize and maintain his range of motion. “Dylan even reacts to and laughs at lots of different sounds and funny noises. At school, Dylan is learning how to use a single message device!” said Sonya.
It wasn’t until Dylan fought through his ordeal that it began to sink in that life would be dramatically different for Sonya, Scott and their family.
“We struggled emotionally, grieving all of the things that Dylan will never be able to do, things he’ll miss out on in life. It’s not always easy to find fun family outings that Dylan can do along with us,” Sonya said. Dylan has an older sister, Marika and younger sister, Jenna. So, “when Dylan is in hospital, it’s a struggle for our family, being apart, one parent there, one parent at home, switching back and forth, as we juggle back and forth between our kids, spending weekends with all of us at the hospital sometimes.”
That is when Sonya turned to Easter Seals for not only financial but emotional support. “It is a relief for us, financially, knowing we have support for items we simply cannot afford on our own but that Dylan requires to continue to make progress and for quality of life. We are humbled by all the donors out there who help make a difference in the lives of our children as they grow up,” said Sonya.