Santiago is currently 3 feet tall, cannot speak or walk and will be in diapers his entire life. He requires constant care 24/7 and can never be fully alone. He has a club foot and the other is deformed. His hips never fully developed after birth. Cockayne kids have an average life span of about 6-14 years but thankfully, his overall health at this time is pretty good. One of the side effects of this syndrome is extremely poor, soft teeth. Some of the prevalent things that take these kids lives early is teeth and gum infection and Pneumonia. We have nearly lost him twice because of both these issues in the past. We can never allow him to be around anyone with the slightest cold. He also has a very small trachea and has required heimlich maneuvers on 4 seperate occasions. Fortunately his dad is trained in this technique. Santiago was born with very little pigment in his skin to protect from the elements and so sun exposure is a problem.
Santiago has had 4 major dental surgeries in large hospitals (all donated) in the United States over the years. Technically these surgeries are for children 18 years and under and now Santiago is 24 years old. His teeth are once again becoming a great problem with 4 loose teeth, gum deterioration, periodontal disease, some infection plus two broken teeth and several crowns needed. His mom spends long hours caring for his teeth but only so much brushing can help with this kind of problem.
We must raise the funds for these procedures. Santiago’s father is a 33 years retired missions pastor in Mexico and now the familiy lives on minimum social security.
The next surgery will have to be done in a hospital in Ensenada, Baja Mexico which will include full anesthesia. A very unsettling, nervous time for mom and dad.
The need is immediate to preserve his heath. So far we do not know the costs but it will be extensive. Please know that medical costs are less in Mexico than the United States, but we are still waiting for confirmation today from the doctors and dentist as to what the total cost will be for this procedure and trip to have it taken care of. Having this surgery will (God willing) preserve his life for at least another year or two until we once again face this problem. Santiago is beginning the ageing process and his recuperative time is increasing with each passing month.
Other ways that help is needed is the constant cost of diapers and wipes plus medications when needed although that generally does not happen unless he is exposed to someone who is ill. Also, we need to complete some shaded play areas for him to scoot around on his little bike for exercise but since he has no recognitioin of danger, we also need to install safety fencing so he can play safely.
In short, the problem is urgent and becoming worse as time goes by.
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