FROM AJ’S PARENTS:
On December 22, 2008, we became the proud parents of Allen Joshua (AJ) Lund. As first time parents, we had a lot to learn, even moreso when it was explained to us the birthmark on the right side of AJ’s head and face was actually a Port Wine Stain. We were told AJ would need to see special doctors, and we immediately began our search for the best doctors available.
Through a referral from a family friend, we found a fabulous dermatologist at Children’s Hospital of Wisconsin, in Milwaukee, who specializes in pediatric birthmarks. AJ has had eleven laser surgeries to lighten his birthmark, and we’re thrilled with the progress he’s made thus far. He has also had several procedures with a pediatric ophthalmologist due to the involvement of the Port Wine Stain in and around his right eye. Fortunately, AJ’s eye pressure levels have been in the normal range and he does not have glaucoma.
However, on August 1, 2010, AJ had a series of seizures and was flown by Flight for Life to Children’s Hospital where he was diagnosed with Sturge-Weber Syndrome. Our lives were turned completely upside down! Doctors experimented with different medications, and after a week, we were told that SWS is a progressive disorder and AJ’s case was referred to as a “hard control”. After two weeks at Children’s, AJ went home on Phenobarbital and Keppra, yet we were told he would not be able to remain seizure-free on medications alone. Doctors at Children’s Hospital believed AJ would need a hemispherectomy in order to effectively stop the seizures.
We were scared and uncertain, not knowing what the future would hold, but we knew we had work to do to help AJ fight his battle. We began a second-opinion search for the best facilities and doctors in America. After extensive research, and with help from the Sturge-Weber and Hemispherectomy Foundations, we sought opinions from two other top-notch medical facilities. We made the most important decision of our lives in choosing Cleveland Clinic, praying for a miracle. Thankfully, we came in contact with Dr. Ajay Gupta and Dr. William Bingaman. They studied AJ’s medical records, ran more tests, and determined AJ did not need a hemispherectomy. Instead, they recommended a temporal/occipital lobectomy.
On January 13, 2011, AJ underwent a successful surgery at Cleveland Clinic without any complications. After five days in the hospital, we returned home to Janesville, Wisconsin with our smart, energetic, happy-go-lucky little boy.
AJ continues to develop normally and has been seizure-free since the surgery. He has adjusted well to the loss of his left peripheral vision in both eyes, which we knew would happen as a result of the surgery. Doctors told us AJ will never notice any loss of vision, because he had this procedure done at such a young age.
We traveled back to Cleveland in August for follow-up testing and the doctors said everything looked great. We can’t thank them enough for the future they’ve given our son! We are truly blessed!
We feel very fortunate to be AJ’s parents, as he has taught us so much about courage, strength and life on this journey. Along the way, the support we’ve received from family, friends, and the Sturge-Weber Foundation has been extremely remarkable. Together we hope to continue to raise awareness of SWS and help AJ and others win this fight. Live Strong! GO AJ GO!
**UPDATE** AJ is now 3 years old and he has now had 14 laser surgeries. (At the time the story was written he had 11.) He also had an eye surgery on 10/17/11 to realign and strengthen his right eye, which had began deviating to the outside after his seizures. If you want to read more about our journey, go to www.caringbridge.org and type in ‘getbetteraj’.