|Rare Disease Day|
The US defines a rare disease as a disease that affects less than 200,000 people at any given time. The average Facebook user has 130-150 friends (depending on source). To put this in terms you might understand, every one of your FB friends represents about 1350 people with just one rare disease. There are about 7,000 diseases categorized as rare by the USCDC. Half of those affected by rare diseases are children.
Lots of money and awareness are raised for heart disease and breast cancer. But what about funding for all those rare diseases that claim the lives of thousands of people every year? Those diseases that, when mentioned, produce a vague nod and raised eyebrow in conversation. Pulmonary Hypertension is one of those diseases. Over 15,000 people die from PH and its effects each year. 66% of those with PH are over age 65. Pediatric Pulmonary Hypertension is extremely rare. I am all-too familiar with this one, very rare disease.
|Pulmonary Hypertension Association|
|Jacob, after he got his IV port. Lots of stuff|
for such a little boy to carry around by himself.
For the next two and a half years, we experienced many bumps and several really scary moments. We made many trips to Nashville for appointments and made far too many trips to Nashville in the backs of ambulances. Jacob was life flighted on Thanksgiving Day. He had a break in his line a few days before and had developed an infection. Scary does not begin to describe some of the emergencies. Terrifying would be a more accurate description.
|Jacob, Easter Sunday 2010|
Always wearing his backpack.
Jacob was an amazing little boy. Truly. He was an avid reader. He loved music, puzzles, Thomas the Train, Woody, and The Wiggles. His favorite color was red. He loved desserts, his guitar, and his little brother. He was cheerful even when he was sick. He had bright blue eyes, a sweet voice, and an infectious laugh. He found joy in every situation, strutted down the center hallway at church, and charmed the nurses out of their equipment in the hospital. I could write for days and not communicate everything Jacob was. Jacob. My sweet and wonderful and beautiful first-born son. Gone.
Support research and the search for better treatments. Pray for a cure. Help take the imminent death of a child out of the equation for even one family. Fight Pulmonary Hypertension. Jacob fought it for two and a half years. Don't let his fight be in vain.