We were blessed with a beautiful 7 lbs. 20 inch boy on November 30, 2005 in Jacksonville, Florida. We named him Wesley Quinn Eckman. The only complaint this little newborn offered was reflux symptoms after meals and he would never take to the breast for feedings. Wesley would take the pumped breast milk from a bottle, but he would take longer than what we thought was normal to finish a feeding. We repeatedly brought this concern, along with reports of developmental delays, to our pediatrician’s attention. The pediatrician’s only response was that all babies develop at their own pace and he offered strengthening exercises to help meet infancy milestones.
Ironically, Wesley’s symptoms worsened the week of his second set of immunizations. He now suffered from increased irritability, decreased interest in feedings, fever and mouth ulcers. We were led to believe the immunizations held responsibility for these symptoms. Then, at 4 1/2 months of age, Wesley experienced a grand mal seizure and was hospitalized for 21 days in All Children’s Hospital in St. Petersburg, Florida. During his hospitalization, Wesley was treated for encephalitis with the probable cause being the herpes simplex virus (HSV). Although all the tests for infectious diseases came back negative, we were encouraged to treat him for HSV because of the stated symptoms. During our hospital stay, his symptoms appeared to decrease and no seizure activity was noted during multiple encephalograph (ECG) studies; however, repeated magnetic resonance imaging (MRI) tests revealed increased brain damage. We were given the explanation that the virus had attacked the neurovascular system, but we were told that with rigorous therapies, Wesley should be able to reach developmental milestones with only mild delays.
After a couple of months of treating Wesley with anti-seizure medication and physical therapy, we had hope that he would return to the healthy, happy baby that he was before this nightmare began. But sadly, the seizure activity began to increase along with the feeding intolerance, so we sought a second opinion at Johns Hopkins Medical Center in Baltimore, Maryland. Without a definitive diagnosis from Johns Hopkins and his symptoms worsening daily, we took Wesley to Children’s National Hospital in Washington, D.C. where we hoped to find the answers to our many questions as to why our baby’s health continued to decline instead of improving.
Many more diagnostic tests were completed to reveal the dreadful diagnosis of Menkes disease when Wesley was 8 months old. We were told that Menkes is a terminal illness and palliative care was all that could be offered at this stage of the disease. We were instructed to go home with Hospice care to manage his symptoms. We did go home and prayed that he would be the one baby to beat all the odds and be cured miraculously. His love for life was evident in his toothless grin that he offered every morning upon awakening. I truly believe he would have been happy all through the day had the side effects of the anti-seizure medications not been so severe. As the disease progressed, Wesley suffered to the bitter end. He had a story to tell and since he is no longer with us, we are gladly taking on the role of sharing his life story with all who are willing to listen.
Wesley fought this battle with such bravery that he will forever be our hero. The disease finally took over and Wesley earned his angel wings on November 15, 2006, two weeks shy of his one-year birthday. Menkes disease has no mercy; so please help all the Wesleys in the world to be healed of this affliction by joining us in advocating awareness of this disease.