June Corley Jessee was born on April 29, 2012 at 6:28pm. She was 8 pounds 9 ounces and 21.25 inches of pure love. As with any mother, June’s first few moments in this world will be forever imprinted in my brain. I remember how June’s skin felt against mine when the doctor placed her on my stomach after delivery. I remember the sound of her first cry, and I remember how proud and happy my husband was as he cut the cord, took June’s first pictures, and told me her weight and height. I also remember how blessed we felt as we looked into her beautiful blue, almond shaped eyes. It was by far the best day of my life.
Today, I have even more love for June than I did on that rainy day in April, but it is a love that also comes with worry, fear, and desperation. This summer, Matt and I have taken June from doctor to doctor, hospital to hospital, specialist to specialist. At first she was diagnosed with "Auditory Neuropathy," a type of hearing loss associated with how the brain processes sound. Then, when June was a little over two months, she started having Infantile Spasms "IS," a catastrophic form of epilepsy found in babies. One of the biggest challenges with IS – and there are a lot – is that there are many, many possible underlying causes. This means there are many, many possible outcomes. I'm told you will see families with children who are struggling greatly, as well as children who have made tremendous progress. Another mother warned me not to compare June to other children with IS and try not to get too hopeful OR too fearful from the stories I’ll read.
Now, we are focused on figuring out why June is having Infantile Spasms. She has already been through so much including an MRI, a spinal tap, many EEGs, eye exams, a VEP and several blood and urine tests. So far all the tests for underlying causes have come back negative, but we are still waiting on the genetic test results (there are about 30 genetic disorders that can cause IS). At the same time, we are treating the spasms aggressively. So far, we have tried six different medications and while June has stopped exhibiting outward signs of the spasms, the EEG shows that June is still having abnormal brain activity indicating spasms. June’s neurologist told us that it can be difficult to tell when a baby is having spasms and often the only way to tell is through an EEG. He also said that unfortunately it is an all or nothing proposition. June could be having 1 spasm or 100 spasms a day and the concern would be the same. Unlike other forms of epilepsy where the goal is to control seizures through medication, the objective with infantile spasms is to stop them completely so that brain activity can return to normal. Only when the EEG is normal, can a baby begin to develop normally.
Next, we are taking June to Dr. Chugani at Children’s Hospital of Michigan who is the foremost authority on IS so that he can evaluate her for surgery. In the meantime, we are trying different medicines and hoping we will find our miracle drug.
Please keep June, Matt and me in your thoughts and prayers. I've been amazed at how brave June has been over these last five months through all the tests, doctors, and medicine. Through all of this, she still smiles, laughs, and squeals. She is a happy baby even after all that she’s been through, and we can all learn from her strength. I know we will get through this, but we need your continued prayers and support to help us.