The Greenway Family Story

Submitted by River’s dad, Storm:

River has gone through two very distinct journeys in his young life so far. First, after 36 hours of labor River was born with Hypoxic Ischemic Encephalopathy and a subgaleal hemorrhage. After a perfectly normal pregnancy, we were told on day one that it could be River’s last. The prognosis was bleak but after hours of blood transfusions and NICU doctors bracing us for the worst, the transfusions started to take. At this point, River was four hours old and 80% donor blood, everything else was pooled in the back of his head in the hemorrhage. 

As the transfusions began to take, we immediately felt a slight glimmer of hope. Transport teams were called immediately to prep airflight and begin the process of getting River to a more suitable NICU where they could aid his recovery. The transport team noted they must maintain a low flight course because of River’s blood consistency and the recent transfusions. While we’re not out of the woods yet we finally had something to hold on to. At seven hours old, River was airlifted to another hospital and my wife, River’s mom, Natasha chose to be discharged. Physically, she wasn’t ready to be discharged but we were both determined to follow behind the helicopter to be with River. 

Fortunately, the Ronald McDonald House of Kansas City was kind enough to let us stay in their brand-new wing of Overland Park Regional (OPR). By the time we arrived, River was being treated under cooling therapy. This is essentially a low grade of hypothermia that helps reset neurological trauma. After he was removed from the cooling he was given an MRI, which indicated there was no irreversible damage. After this, we still had a long road to recovery before we could leave the NICU but we thought we were through the anomalies. 

As we went through recovery, it wasn’t until River was roughly four days old that we got to hold him and longer than that before the swelling came down enough for him to open his eyes. At around two weeks old, when it was almost time for his dismissal, River was getting his hearing screening and every test came back as “inconclusive”. This was peculiar as nobody had seen that result before. Due to the inconclusive results, they assumed auditory neuropathy due to all of the alarms from his stint in the NICU. Finally, River was able to go home.

Due to all the birth trauma and low APGAR (appearance, pulse, grimace, activity, and respiration) scores River had experienced, he was able to take advantage of State early intervention programs in conjunction with all his specialists to keep him on track. By five months, however, the neurologist River was seeing had concerns that there was something wrong. This neurologist specialized in mobility disorders but could keenly tell it was not Cerebral Palsy due to River’s limb interdependence. Instead, the neurologist sent River for genetic testing, stating the results would likely take some time. To our surprise, we were called in just 3 days and met with a heavy tone stating we would need to come speak with him in person.

River had been diagnosed with Pelizaeus-Merzbacher Disease (PMD).

Everything seemed like it was moving in the right direction but there was still something wrong. The prognosis given to us that day was wrong, the direction given to us that day was also wrong. The only thing that was given to us that was right was the name of the disease.

After that, we met Dave Manley.

Dave painted a different picture of what PMD looked like, while still not the world that we had seen for our son or the life that we had planned, we had a roadmap and people to talk to. This journey put us on a path to meet with the Children’s Hospital of Philadelphia (CHOP) and finally let River truly be seen for the first time. After that visit, everything changed. We finally knew more about this disease and didn’t feel so in the dark. We also finally knew what caused River’s traumatic birth. Turns out low muscle tone (caused by PMD) can prevent babies from being as active as they need to which can cause major birth injuries. 

Suddenly things started to click and the world began making sense. There were indicators of issues from day one that were being identified and handed to us a year later.

The burden of the first day and the NICU stay had almost disappeared all at once simply with more knowledge and people who were able to truly see River as he is, as we see him. We see River as someone who is capable, strong, and determined, a boy who doesn’t know how to quit simply because to him it was never an option. He is my inspiration and my hero. As River was experiencing his first trip to CHOP, I knew I needed to do more. My parents raised me with the mindset that you would do anything to protect your child and better their wellbeing. Never did I think I would be put in a position where that was tested. 

I joined the board of the PMD Foundation and began my involvement in the organization. That was just over a year ago. Today, River is learning how to walk in a gait-trainer, can tell you all the things he loves, and he is changing the world just by being himself. As the Chairman of the PMD Foundation, I find myself more dedicated every day to moving the needle with our incredible partners in trying to make sure that my position no longer exists.

That doesn’t happen until River and every incredible kid like him has a cure available to them.