Beau Harrison Armistead was born on October the 10th 2008. He weighed 5lbs and 15.7 oz. We were lucky to know that Menkes runs in my wife’s family (she had a brother who passed away from Menkes in 1992). We were still excited to learn that we were pregnant, and when the time came… we found out we were having a boy.
As you can imagine we were concerned that this child may have Menkes so we had amniocentesis performed to find out. On July 27th 2008 we found out our precious baby boy does indeed have Menkes. We were devastated to say the least, saying all of this we do not believe in abortion for any reason. We decided to put this in God’s hands because we knew that he would lead us in the right direction. This being said we found out about the copper studies being performed at the NIH very soon after the test results were given to us. Beau was given to us as a precious gift from heaven and we have vowed to cherish him every day.
Beau started copper therapy just 5 short days after being born. He is a pretty fussy baby but started smiling and laughing around 7 weeks. We had a bit of a scare when Beau had his first seizure on December the 10th, and spent several days at Arnold Palmer Children’s Hospital where many tests were performed including a 24 hour EEG, and an MRI. Beau is now 18 months old and this has been his only seizure to date. He has been on Phenobarbital since his stay at Arnold Palmer and it seems to be keeping the seizures at bay.
In January of 2010 Beau had to have surgery to remove two large bladder diverticula. He bounced back pretty quickly from the surgery and continues to do well. His Neurologist, Urologist, Pediatrician, and Dr. Kaler are all pleased with his progress. Beau gets PT and OT every week. His therapists love him and love to see him progress. Beau is about 3-4 months behind in development but continues to make his milestones. Beau crawls, bears weight on his legs, and is an active little boy. He high fives, claps, and says about two dozen words.
Early diagnosis and aggressive proactive treatment were the key to his survival. We are so blessed to have Beau who is doing so well. We absolutely adore Beau and so does his big sister Baylee, who dotes on him daily! He’s so unbelievably happy all the time. He’s truly a joy to be with. We hope by sharing our story we can meet some of you who already have experience with Menkes and others who are just beginning this journey. If you would like to contact us you can do so by emailing us at email@example.com. If you’ve attempted to email us before with no response, please forgive us. We don’t check the email address we posted very often. So please email us if you wish at the above email instead. We’d love to hear from you.
Scott and Melanie Armistead
Posted: June 2010