Team Ian

As some of you may know, Ian is an 11 year old normally very active boy who enjoys playing with his friends and playing soccer. Unfortunately, has been back in forth between doctors and specialist and from hospital to hospital since March trying to get some answers as to what has been going on. Back in March he began having balance issues, vision troubles, and several other abnormalities.

On March 22 the doctors ordered for him to have an MRI done and just two days later he was admitted to the Pediatric ICU, due to the MRI showing a mass on his brain. Subsequently he has had multiple MRIs while being in and out of the hospital. They determined he had a condition known as ADEM (acute disseminated encephalomyelitis) which essentially means his body is experiencing an inflammatory response to his brain and spinal cord ultimately damaging the protective covering of nerve fibers. Since being diagnosed with ADEM he has had several rounds of high dose IV steroids in an effort to combat the inflammatory response. On March 29th he was discharged from the hospital with oral steroids on a tapered dosage plan. We started to believe things were improving until his symptoms returned towards the end of April. On April 24 he was admitted once more to the hospital. They did additional imaging and determined they needed to administer IV immunoglobulin (IVIG) therapy and again, heavy doses of IV steroids. Once those therapies completed, they discharged him from the hospital.

Each time he has been discharged and the steroid dosages have been tapered down, his symptoms return. The neurologist wanted to do a biopsy, at that point Lisa pulled his pediatrician in and got a rush appointment with Duke. On Monday June 3, we visited Duke hospital for a consult with 6 different doctors and they decided to take charge of his case. On June 6 and 7 he had another round of IVIG therapy and high dose IV steroids administered at Duke. On June 9th he went in for yet another MRI, however this one was 2 hours long so they had to put him to sleep for the procedure. The results of his MRI showed no changes after the treatments last week. Duke has run more blood work to check on additional anti-bodies to determine what exactly is going on. 

Ian's parents, Jason and Lisa have tried to be by his side during this trying time as it is difficult for the entire family to see Ian struggle with so many unanswered questions. Jason and Lisa both have had to miss a lot of work in order to be the support system that their son needs and with that they are unable to receive a paycheck due to their inability to attend work. Their medical bills are not 100% covered by insurance and with every scan the doctors order, IV therapy, and blood collection, the medical bills continue to grow. 

Please keep Ian and the family in your thoughts in prayers as they attempt to get answers and a treatment that will work long term. If you can help in any way at all, the family would be forever grateful.