Support Thomas's rare condition

Thomas is a fun energetic little boy. In his short life he has had to undergo so many tests and procedures. He is 10 months old and has been diagnosed with a rare disease, generalized disaccharidase deficiency. This deficiency means that he cannot process most disaccharides which are found in almost every food. He is on a very limited 6 item diet and has to eat organic food since he cannot have preservatives. It is such a rare disease that doctors don't know how to treat him. We have found one doctor at Johns Hopkins in Maryland. He is also on prescription formula that is very expensive and insurance keeps denying it, but we are working on it every day. We need to get him to a doctor who can help and specializes in what he needs. We have been for right now travelling back and forth to Florida 2 times a month to have him see by a specialist, but they are not sure where to go from here.
Recently Thomas has been hospitalized because he stopped eating and drinking. He had surgery on Feb 11 to remove his extra digits, have tubes put in his ears and have an endoscopy with biopsies done. After his surgery he stopped eating and drinking and lost enough weight that they hospitalized him. He now has an ng feeding tube and has not improved after 4 days in the hospital. They are looking at medivacing him from Jacksonville where he is currently at with Wolfsons to Johns Hopkins in Maryland. Currently we are living at the hospital because we don't live here in Jacksonville, we live in Georgia. We are paying for everything for myself and my husband up front for this hospitalization. We did not expect to be hospitalized so we did not bring anything with us down here. For Thomas's health and best interest he needs to go to Maryland asap. This is going to take a toll financially, mentally and physically on us, but we will do whatever is best for our sweet baby boy.
Please if you can donate at all, if you pray, or if you can even just share this to maybe raise awareness for his disorder, it would be greatly appreciated.
The Army has been very helpful with this and has helped cover financial burdens. Insurance covers Thomas's stay while in the hospital but nothing is covered for us, the parents.