Romeo Medical fund

In 2019 our 7 year old son  Romeo was diagnosed with autism ,microdeletion syndrome and Chiari Malformation ,  What is chiari? Chiari means his  brain is sagging down into his spinal canal space. This causes craniocervical crowding which in turn can causes seizures, unimaginable pain, and neuropathy. In 2020 he was also diagnosed with juvenile rheumatoid arthritis , and also Crohn's disease along with a painful rash on his legs ,  in  the past couple of months he has become worse ,with pressure in his head and neck, dizziness and swelling in the back of his head , which makes him very irritable. We took him to his pediatrician who decided to run a skull xray which showed copper beaten skull syndrome with intercranial pressure, so we sent result to a neuro surgeon who said it was urgent and needed us to go to his office the next morning , when we arrived he explained our son had Craniosynostosis and children can pass in there sleep and or brain damage if not taken care of as soon as possible .  Craniosynostosis is a condition in which one or more of the sutures close too early, causing problems with normal brain and skull growth. Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance. which was caught to late. we have received 2 more opinions which the 2nd agrees with the first doctor .

Our Family needs to travel to Boston Childrens hospital as an emergency , to see the surgeons there,and dont know how long we will have to stay ,  but my husband has to take a medical leave so we can go, we do have to drive due to Romeos condition , which means we need to stop and stay at hotels along the way, and still make sure other things stay afloat,  make sure we have  proper winter clothes any little bit counts and we appriciate all that we receive , we are very scared he is our only son , and we are attached to him ,and want to see him live a normal life . Thank you in advance to all that helps. it is greatly appreciated. Prayers welcome , praying for a miracle.