Kairos for Keegan and The Brain Recovery Project

Keegan’s Story On April 12, 2013, Elly and Steven Deveney welcomed their third child, Keegan, into the world. Shortly after he was born, it was determined that Keegan has Sturge-Weber Syndrome. Sturge-Weber Syndrome is caused by a genetic mutation that usually affects the skin, the eyes and the brain. The mutation creates a malformation of excess blood vessels and capillaries often beneath the skin (the port-wine birthmark), often inside one or both eyes, and usually on one hemisphere of the brain. In Keegan's case, he has a bilateral port-wine birthmark on his face, both eyes are affected, manifesting as glaucoma and diffuse choroidal hemangiomas, and he experienced seizures that began at just two months old, caused by the brain involvement.

As he grew, Keegan’s seizures became increasingly difficult to manage with traditional medications. At two different times he had to be hospitalized after entering into status epilepticus, a life-threatening condition in which the brain is in a state of persistent seizure. The second time this happened it was determined that he should continue his medical care in Boston at Children’s Hospital. He was eventually stable enough to be released. However, after a couple of months his seizures became again increasingly difficult to manage. Since the actual cause of the seizures is atrophy and calcification of tissues that is progressive in nature, there was a chance that the seizures could become completely intractable. The damage to Keegan’s brain had been detected in one hemisphere - if the seizures continued they could possibly have begun to affect the healthy side of his brain as well. On February 4, Keegan’s case was presented to a group of 60 doctors at the Boston Children’s Epilepsy Conference. It was deemed that surgery was in his best interest.

After much soul-searching, Elly and Steven decided that this was Keegan’s best option and they made the decision to proceed with the surgery as soon as possible. On March 26, 2014, Keegan had a nine-hour functional hemispherectomy at Boston Children’s Hospital. After two weeks of recovery at Children’s and two weeks at Spaulding Rehabilitation Center, he is now in out-patient rehab through South Shore Hospital and Early Intervention. Elly, Keegan and his two siblings Riley and Rowen are here in Massachusetts while Keegan recovers. They hope to be reunited with Steven soon.

This young family has been through so much and they are an inspiration to everyone around them. You can follow Keegan’s progress on his Facebook page Kairos for Keegan:https://www.facebook.com/kairosforkeegan

Resources: If you would like to learn more about Sturge-Weber Syndrome, Epilepsy, Hemispherectomy or recovery after the surgery, the following websites are great resources:

The Sturge-Weber Foundation: http://www.sturge-weber.org
The Epilepsy Foundation: http://www.epilepsyfoundation.org
The Hemispherectomy Foundation: http://hemifoundation.org
The Brain Recovery Project: http://brainrecoveryproject.org
We thank you for your support!