Ramon’s Story

Angel Ramon was on his death bed when he was first brought to our home, and doctors gave him little or no hope of surviving those first few weeks with us. Ramon was born with a condition called Arthrogryposis, an orthopedic condition that affects one in every three thousand live births. It simply means “curved or fixed joints.“ Some children are only affected in one area of their bodies such as hands or feet. In Ramon’s case, it affects many areas of the body and is know as Arthrogryposis Multiplex Congenital. Most of these cases have normal intelligence. There are many possible causes for this condition. In Ramon’s case, after much testing, the doctors have ruled out genetics as being the cause. It is caused by a lack of movement for the fetus in the first trimester of pregnancy, due to lack of fluid in the uterus. In his case they have told us that the cause was most likely attempted abortion, or alcohol or drug consumption by his mother, high fever such as measles during pregnancy, or pesticides being used in the field where she was working during her pregnancy. This caused the development of connective tissue around the joints, causing some to be fused into place. Ramon is affected in his hips, knees, feet, hands, arms, shoulders, face, back, chest, head, as well as his respiratory system. Because of deformities in his chest and spine, he has underdeveloped chest and abdomen muscles which compromise his ability to manage congestion involved with an upper respiratory infection. In such times he needs to be monitored closely.

Ramon is now 8 years old and is a joy and blessing to us and an inspiration to many who have had the chance to get to know him well. He is “our boy”, although legally we have as yet not been able to adopt him. He has, and is continuing to amaze the doctors with his accomplishments. Although he can’t walk due to his disabilities, we were told he would not sit up on his own, would not be able to speak, would not be able to get around on his own…he is doing all those things and so much more.

To this point he has undergone 6 surgeries to enable him to better use his hands to feed himself and play, scootch on the floor using his hands to push himself, and also had his feet straightened. He wears a back brace to support his back. He uses a wheelchair, but prefers to be on the floor so he can play with his toys. He is a brave boy, who continually thanks the doctors and nurses for caring for him, no matter how much pain he is in. He is always tells us that he is happy, especially when we are all home together – his favorite place to be. He speaks and understands English and is becoming quite fluent in Spanish. His favorite things to do are watch soccer on TV, play his version of soccer, and make highways with his cars. He is very social and loves to play with his little friends.

We are blessed to have been able to get a medical visa for Ramon, enabling us to take him to Los Angeles to see specialists in his condition, for all his surgeries and check ups. The doctors tell us that he is a unique case, as most AMC children that are affected in as many areas of the body as Ramon is do not survive their first year. God has been healing so many areas of his life a little at a time. God has a special purpose for this little boy!

 

Specific Needs for Ramon: 

  • wheelchair (possibly motorized)
  • future education funds
  • daycare costs
  • travel expenses for medical trips to LA
  • costs of legal paperwork
  • mechanical lift (for the bathroom)

 

Please contact us for more information if you would like to support Angel Ramon!