Emmett's Cure
Our grandson Emmett was born August 2017 with a rare pancreatic disorder called Congenital Hyperinsulinism (HI) Hypoglycemia. His pancreas produces too much insulin which drives his blood sugar down to dangerous levels. He was also diagnosed with Congenital Heart Disease and a swollen kidney- both of which may require surgery.
He spent the first six weeks of his life in the Neonatal Intensive Care Unit (NICU). Infants with HI tend to be "low eaters" so because he will only drink about a third of his food from his bottle, for the first month most of his food was given via nasal feeding tube. At about 4 weeks old a gastro-tube was placed in his abdomen and he continues to have 2/3 of his food pumped into his stomach because he still won't drink it all from his bottle.
At 6 weeks old Emmett was finally released from the hospital and was able to go home with the understanding that due to his HI and slow eating he would have to be fed every 3 hours- including through the night- and be given his medicine every 8 hours.
For the past 3 weeks at home things have not gotten any better. Emmett's diazoxide dose has been increase 4 times and is now at it's maximum level for his weight. He was just admitted back into the hospital this morning (10/14/2017) to compete a fasting study which will determine if the diazoxide is working or not. It is expected that he will fail the fasting study, showing that the diazoxide is not working and that he will then need to be sent to Children's Hospital of Philadelphia (CHOP) to their Hyperinsulinism Center for further testing and possible surgery.
This is why we have come to GoFundMe. Emmett's parents have changed their lives around to ensure that Emmett has the best care possible. They were unable to find an affordable day care in New Orleans that could promise feedings every 3 hours and were comfortable using a G-Tube. The only option they had was for dad to quit his job and become a stay at home dad while mom continues to work. Going to Philadelphia will not be easy or affordable on what is now a one income household. Paying for Emmett's medication, even with insurance, is $45.00 every 3 weeks and that doesn't include his glucose testing strips (a crazy $50 per vial), lancets, special formula, and the multitude of appointments with specialists that he goes to with their co-pay and co-insurance. Unsurprisingly, having a child who requires a lot of medical attention is expensive. We have decided to start a GoFundMe campaign on Emmett's behalf to help his family pay for his treatment, travel, medications, and appointments.
