Justin and Kiani have been together since 2006 and married since February 2, 2008. They have 2 children: Liam (9) and Laikyn (4). Their relationship has been blessed with faith in the Lord, hope for the future, and great love for each other, their children, and family and friends. They also consider themselves blessed by the many trials they have faced as they have been opportunities to learn perseverance, wisdom, humility, and joy in trusting the Lord will always use these to bless the lives of others.
By 2009 Justin had established a stable career as a Software Developer. Kiani was in the US on a long term visa after having moved to the US from Belize at the age of 10, so they filed for her permanent residency that year. They purchased their first house that summer. In September they received amazing news: they were expecting their first child, Liam. In October of 2009, their new journey full of trials began. Justin had been fighting a difficult case of pneumonia but was on the upswing and ready to return to work after a couple weeks of recovery. He was showering when Kiani heard a loud thud and upon investigation found Justin unconscious with his head bleeding. She was able to rouse him and rush him to the ER where they stabilized him, ran numerous tests and eventually discharged him with orders to rest and a referral to a cardiologist specializing in syncope and arrhythmia.
Fast forward 6 months... over 50 medical tests, treatments, and consults... around 15 medications to try and temporarily manage symptoms... the birth of their son… They finally had a firm diagnosis: POTS (Postural Orthostatic Tachycardia Syndrome). POTS is not curable, but most symptoms can be relatively well managed with a combination of dietary adjustments, lifestyle adjustments, medications, supplements, and a healthy dose of patience.
The first five years with POTS was a very trying time. Justin was mostly bedridden and no longer able to work and his disability insurance claim was denied after multiple appeals. Their savings and health insurance ran out prior to Kiani’s permanent residency finalizing. They lost their house but were, thankfully, able to move in with family. A very young Liam learned to find Kiani’s contact picture on a phone and call her when Justin passed out; he was learning to walk and talk at the same time. Justin’s improvement from 5+ syncope (fainting) episodes a day and numerous other symptoms to a relatively normal state of 1-2 episodes a month and minimal other symptoms was quite the process. He adjusted diet to include five to six times a normal daily recommended value of sodium and a high fluid intake to boost blood volume and blood pressure; at first this was very difficult to do and included twice weekly IV Saline infusions. He worked with a biofeedback specialist to learn how to consciously monitor and counteract improper autonomic function. He quickly learned that standing for extending periods and changing posture from lying to sitting to standing took great care and patience in order to avoid triggering an episode. He learned that while distance running was one of his passions prior to POTS, his new goal was to walk a mile, rather than to run 26.2 miles. He gained back most of the 65lbs in body weight he had lost early on, primarily in leg and core muscle to help prevent blood pooling in his lower extremities. He faced and dealt with many emotional difficulties, particularly learning to take “you don’t look sick” as a compliment, regardless of intent. While Justin focused primarily on reaching a semblance of normal again, Kiani began working and they were ready to move on to their next season of life.
Over the next two years, they were able to move out on their own again, welcome Laikyn into the world, Kiani was working full time and Justin was able to work part time and eventually returned full time to Software Engineering. Justin, thanks to the help of his doctors and support network had reached a point of weeks and even months between syncope episodes. Kiani and Justin were able to focus on raising Liam and Laikyn and further developing their own relationship all while making great memories.
Very early on, Justin’s cardiologist told him through faith, patience, and quite a bit of effort, he could eventually get POTS to a “managed” state; this was the statement he keyed in on while mostly forgetting about the warning or caveat he was given to follow it up: “there will likely come times when other health issues, some directly resulting from POTS and some that would have happened regardless, will complicate his condition or have higher impact than POTS itself”. In late 2015, Justin’s gallbladder was highly inflamed and had to be removed. Following this surgery, his POTS went into a full blown flare up. Resulting from this, Kiani’s stress level went through the roof due to reminders of the past and increased current responsibilities, now having 2 children and Justin requiring regular care once more; she ended up having seizures and being hospitalized unable to speak and with extreme muscle weakness as well as other symptoms. Kiani was diagnosed with a Conversion Disorder but was quickly able to overcome the symptoms working with physical therapists and learning great tools to manage the inevitable stresses of life and children and particularly Justin’s health. He has been dealing with dental issues from the beginning of POTS, caused by a combination of being bedridden, dietary changes, and most importantly poor circulation; In 2018, the dental problems became forefront and he was informed by multiple dentists his full top arch is in need of immediate extraction and ideally implants while his bottom arch is no more than a year or two from reaching the same state.
In February of this year, Justin began experiencing an all new set of symptoms: frequent headaches, increased fatigue, depression, mood swings, nausea and vomiting, difficulty concentrating, difficulty sleeping, and muscle weakness over the left side of his body. His POTS symptoms have also flared up. After a visit to the ER, rounds of testing, and seeing a neurologist he has now received a diagnosis: RHIS (Repetitive Head Injury Syndrome). Turns out all of the times he’s hit his head and suffered a concussion, at least 20 as a result of the POTS syncope episodes, have caught up with him. Justin and Kiani are at the beginning stages of trying to figure out what this will mean for them long term but here’s what they know so far: it is progressive / degenerative, avoiding further head trauma is priority number 1 as further concussions will accelerate the progression, he can no longer drive, there is no known cure, there are medications and further lifestyle and dietary adjustments as well as massage that can help manage symptoms. He can still work for now and would prefer to do so as long as he is able.
A breakdown of their current and ongoing financial needs, which you can help with via GoFundMe, every dollar makes a difference:
$8000 - current medical bills: had $68000 at peak, though that amount would have been closer to $300k if not for Justin’s cardiologist providing the majority of his services pro bono and asking other providers to do the same in the early years; they had paid the amount down to only $1800 just 6 months ago)
$24000 - fully trained medical alert and response dog: would accompany Justin everywhere and is the best possible method of preventing further impact events, other than staying in bed the rest of his life
$16000 - full top arch extractions and implants (less than bottom due to the number of teeth already extracted from the top arch)
$17000 - full bottom arch extractions and implants
Anything given beyond the goal will fund ongoing medical costs and set aside as a fund for the inevitable time in the future when Justin will have to transition from full time employment income to disability income (this could be decades away or months away; they have no way of knowing a definitive progression timeline, just that his condition is degenerative)
This is the scripture Justin and Kiani return to again and again through all their trying times:
James 1:2-4 (NLT)
Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.
Links with more information about POTS, RHIS, and success stories of individuals with POTS who now have service dogs:
Service Dogs for POTS:https://www.medicaldetectiondogs.org.uk/project/zoe-and-stowe/ https://www.medicaldetectiondogs.org.uk/project/michelle-and-francis/