JJ's battle vs Hyperinsulism

Since JJ has been born he has been a strong fighter, being born at only 29 weeks and spending a month and half in the NICU, to being diagnosed with Cerbal Palsy, to now making the principals list and honor roll each quarter of this school year. The morning of April 19th, JJ and his brother got up for school like any other morning. We heard JJ falling into the walls and then saw him fall to the floor as he was trying to get ready for the day. We soon realized he needed medical asssitance immediately. We left and went to Johns Hopkins All Children's Hospital in St Pete, FL. There we learned he had a seizure just before waking up due to crittically low blood sugar. His level when he first arrived was at 37 but quickly dropped even lower to 27. For a child his age, his sugar should be in the 100's. Doctors stated that he never should have woken up. He was then sent to the PICU where he spent the next 3 days. He was given an umbrella diagnosis of Hyperinsulinism until further tests results would come back. He has never had any history of low blood sugar, and this condition is usually found in babies and not a 9 year old child. We have continued to monitor his sugar every hour through the night and several times during the day to ensure that his sugar does not get too low again, but his  sugar has continued to drop dangerously low on multiple occasions. His endochronologist has now put him on a medication that he must take 3 times daily. JJ states that this medication is nasty and he continues to fight us on it. We have found that his condition is so rare, and only found in infants, so the medication is only made in liquid form. JJ continues to advocate for himself for a better tasting medication. haha Like we said, he's a fighter. His condition is so rare that they are still conducting research on it.
JJ has been through multiple MRIs and tons of bloodwork with more to come. Since his last MRI we learned that he has a mass on his pancreas causing the issue. He has been referred to The Children’s Hospital of Philadelphia (CHOP) and will be admitted for a 4-8 week stay for further testing, treatment and surgery. They are unsure how long and what kind of treatment they are going to do until the genetic testing and special MRI scans are done at their hospital. JJ is very nervous, but is trying to stay strong.
This was completely out of the blue and we are asking for donations to help with travel, food and housing for the duration of his stay. We are on the waitlist for the Ronald McDonald House, but there is no guarantee that they will have a place for us. We will also have to take time off of work to be there with him.  We plan to take turns staying with him in Philadelphia as one of us has to continue working to cover bills at home and maintain insurance. We have drained our savings and still have a large out of pocket expense for medical bills from his hospitalization.
 Any money left over from donations will be donated to CHOP for further research being conducted on this rare condition and to the Ronald McDonald House Charity. We thank you for taking the time to read this and would greatly appreciate anything you are able to donate. God Bless!