When healthcare doesn’t provide the solution you need, sometimes you have to build it yourself.
This story is not my own, but it was one so compelling I wanted to share it with others. I found Max’s story through his father, Jonathan. Jonathan is a software developer and engineer, and a customer of Initial State. As part of our usual customer outreach I emailed Jonathan to get feedback on our platform. What I did not expect was the story Jonathan shared with me about his son, what he has done to help him, and how our product played a small part in that.
Max was born in August 2013, a happy, healthy baby. After a few weeks, his parents noticed that he seemed to have trouble lifting his head. This raised concerns but his parents wanted to give him time. When at his 2 month checkup Max was still unable to lift his head, their doctor referred them to a pediatric neurologist for genetics testing. After a few weeks Max’s results came in: he had Spinal Muscular Atrophy (SMA). The doctors explained that his “floppiness” wasn’t going to go away — that the absence of a key protein was causing his muscles to atrophy and that would lead to difficulty with eating and breathing. Even a simple cold could be life-threatening. They were told that, “only 50% of children diagnosed with SMA type 1 live past the age of two.”
Fast forward five years, and Max is beating the odds — not just living with SMA but thriving. He has round-the-clock nursing care, daily therapy via home visits, and attends kindergarten using a telepresence robot.
Max uses a number of medical devices (his “extra accessories”) to breathe, cough, and eat. These devices contain and emit vital health data, which in hospitals is posted in real-time to monitors at the patient’s bedside and at nursing stations. This data enables nurses and doctors to keep an eye on their patients, to track their progression over time, and to be notified of sudden changes. There is no analogous system offered for home health care, so Jonathan decided to make one.
The most helpful information for assessing Max’s immediate status is from the pulse oximeter, a machine using a small sensor (placed on a finger or toe) to read heart rate and blood oxygen (SPO2) levels in real-time. The pulse oximeter can be set to alarm if these values go outside of the normal range. Following examples from other special needs dads, Jonathan created a setup to read these numbers into an elasticsearch database. His next step was to put the data into Samsung SmartThings so he could use Max’s medical data as triggers for smart home events. It was at this point that Jonathan discovered Initial State and its SmartThings integration.
“Initial State gave me exactly what I needed for visualizing the data I was harvesting from Max’s medical devices,” Jonathan reports. “I plugged Max’s machines into smart outlets and added those to his Initial State dashboard. This lets me or my wife check in on Max when we are outside the house — we can see that his feeding pump was started or his cough therapy is being administered. This gives us a little extra peace of mind…or lets us know that Max has awakened and it’s time to head home.”
Max is now receiving the first-ever approved therapy for SMA, while he and his parents continue to hope and work for a cure. In the mean time, Initial State has helped make their lives a little easier.
Want to learn more about Max and his story? You can find more information at Max’s website. To help people with SMA find help and support medical research leading to a cure, make a donation at curesma.org.