02/02/2024
Turning Pain into Purpose:
The HEAL Foundation
Finally, after almost a year of being bounced from doctor to doctor and treatment to treatment, our daughter Leah was recently diagnosed with Complex Regional Pain Syndrome (CRPS). It was relieving to finally understand what it was that was beating her up, however that meant the next step in our process had to begin. She was referred to and accepted into an inpatient, hospital-based, chronic pain management program where she stayed for more than a month. The program is long, intense, and yet very impactful -- they were able to help Leah regain the most basic functionality that she had lost. However, the impact does not end when a child returns home; daunting follow-ups and additional treatments need to continue just to ensure continued progress. Throughout our whole experience we had to advocate strongly for Leah, or we would have been swallowed up in the medical system Some would even say we had to be extremely annoying until we got what we (she) needed. The more we talked to others going through similar situations – it was perfectly clear – the glaring gap for anyone caught up in this process is that families need more support. This isn’t only a condition that affects the patient; the entire family is impacted – just in a different way. We are fortunate to live in an area where doctors are plentiful, the pain program was within driving distance, we are both employed by amazing companies that treat us with respect and empathy, we have great medical insurance, and we had a strong support system outside of our own family. Many, unfortunately, do not have these luxuries (sad, but true). Many families can’t find a program like this for their loved ones, and if they do it is not within a reasonable distance. Many do not have health insurance that will help pay for treatments or the available means to cover the sudden financial burden that any similar situation unfortunately results in. Others can’t afford to take off from work to supply the care needed or even know where to go for help. No family should have to see their kid suffer just because they can’t afford to help.
That is where the Heal Foundation (anagram for Leah) will come in. This foundation is not for Leah or for our family. This is for all of the other families that are struggling and need help. The Heal foundation will be available for families to tap into for financial assistance for travel, lodging, food, supplies, whatever they may need while taking care of their child. Our vision is to work directly with hospitals, outpatient facilities, local support groups, and by word of mouth to ensure those in crisis have the additional support they so desperately need. How, where and when we support will undoubtedly grow and improve over time. No assistance is too little; and we know there are many families out there that need our help.
