Suit Up, Sidekick — the Adventure Starts now!
With your support, we can fund the treatments, therapy, and care he needs to protect what remains of his sight. Together, we can give Emerson a future full of clarity, and hope.
Our son Emerson just turned 6 years old. In mid-March of this year, he started experiencing persistent migraines that caused him so much pain it left him crumpled on the floor. He was having trouble seeing and had problems with dizziness. One Sunday, as he was drawing during church, he kept bringing the page very close to his face. When we asked why, he said he had to do that to see it because it was "too small." It was obvious that he couldn't see as well as he used to. We made an appointment for him as quickly as he could, as these changes were scary and came on very fast.
At his appointment, we were referred to a specialist due to significant concerns, including potential issues like a brain tumor. At the specialist, they found that his optic nerves were so inflamed that they immediately sent us to Masonic Hospital for emergency admission and testing. Emerson was diagnosed with severe papilledema, classified as stage 3-4 in one eye and 4 in the other out of 5. What these results meant is that he is legally blind.
Our first night at the hospital, they performed a ‘quick’ MRI and attempted three lumbar punctures while he was sedated but still awake. When they couldn't get the fluid, they decided to put him under the next morning for a full MRI and lumbar puncture. Thankfully, the MRI ruled out a brain tumor, which we are so grateful for. However, the lumbar puncture revealed his pressure was at 32 cm, far above the normal range of 15-20cm.
We spent several days undergoing various tests, as the cause couldn't be determined.The doctors ultimately concluded that Emerson also has IIH (idiopathic intracranial hypertension). We were grateful to have a diagnosis, but the tough thing about IIH is that currently there is no known cause. That means this could be a one-time incident or a recurring issue triggered at any time. What we were told is that essentially, his spinal fluid was overproducing, elevating pressure in his brain and compressing his optic nerves. That leads to vision loss. Because the problem lies behind his eyes and not within them, glasses will not assist him.
We narrowed down his medication options to two that would work in his very unique situation. One caused a significant allergic reaction, while the other repeatedly put him into sepsis, resulting in numerous hospital stays, including one that required a life flight. It was one of the hardest times our family has ever gone through. There's no feeling like not being able to help your child when they're struggling. Emerson was a champ throughout.
Currently, Emerson’s vision has improved some, but he still struggles (we're told that if he was at driving age he would have restrictions). But that said, the fluid levels have currently decreased thanks to his medications which is fantastic news! We need to maintain this progress, as any further issues could lead to difficult decisions regarding his vision. The current concern is scarring of his optic nerve and regaining some or all of the vision loss he's already experienced.
On a positive note, we discovered a non-invasive therapy treatment center with a high success rate for helping individuals with vision loss regain some of their vision back (more than 70% of patients experience noticeable improvements). Since our last hospital stay in June, I’ve been in contact with the center and I'm thrilled to share that Emerson has been ACCEPTED into the program! Thank you, Jesus!
The problem (as it always is in medicine) is that this treatment comes with significant costs, and we are seeking support. We don't like having to ask for help, and we've always been self-sufficient... but we would do anything for sweet Emerson, even if it means setting aside our pride and admitting that we need help. Please consider supporting us financially, sharing our story with your friends, and keeping us in your prayers. We appreciate all of it!
We remain hopeful for Emerson’s journey ahead!
With love,
The Watsons
Ethan, Madi, Easton, Miller, Emerson, and Milton