As parents, I think we can all agree that we feel terrible when our children become ill. We take them to the doctor in hopes their illness can be fixed with rest, fluids and maybe some simple meds. What we do not expect are those illnesses that are uncommon or hard to detect through regular testing to affect the lives of our child. Even more debilitating when a child becomes hospitalized for an illness where there is little information on the causes and the treatments are very limited.

9-year-old Wall Township resident Alan Bagagem is a child who loves to play soccer, basketball and loves to run, is now confined to a hospital room with severe pain in his legs and fear of more seizures.Alan’s parents Alain and Jennifer have been right by his side leaving their two daughters Arianna 14 and Ava 11 to be cared for by their grandparents who are in their 70s.

Jasmine Rodriguez - Townsquare Media via Alain Bagagem

What is wrong with Alan? Initially he was presenting symptoms of being tired, being off balance and tripping a lot according to his journal page on the Caring Bridge site. After stubbing his toe suffered from severe pain in his foot and leg. Soon there after he had his first seizure. After many unfounded tests and doctor’s visits, seizures and days of excruciating leg pain, Alan was transferred to Children’s Hospital of Philadelphia or CHOP for short. He was soon then diagnosed with a rare auto immune disease also known as Anti-NDMA. Click here for information on Anti-NDMA.

Alan has undergone IVIG treatment and steroids. The fight for Alan is far from over and there is no definite timeline of when he will get better but according to Alain, it could be an extended period of time. Until then Alain and Jennifer continue to remain by his side. Unfortunately, that means they are both unable to hold down their positions at work. For this reason, they have set up a GO FUND ME page to assist their family in paying for medical expenses and future bills and rehabilitation costs for Alan. The GO FUND ME page has already raised over $20K to assist with these expenses.

Alan would like everyone to know that his journey is a long one. According to the Caring Bridge journal dated June 19th, 2019, Alain and Jennifer write “We see his arms and legs twists as he can’t find a comfortable position for a while and he’s sleep deprived. During a good moment he is walking with little assistance and sitting next to me on the sofa here without my help. He is happy and laughing, I see Alan coming back to his old self. Then an hour will go by and all changes.”