Jacob is a 6 year old boy who has a extremely rare chromosome disorder (DUP15Q) this effects him both physically and mentally. His brain is functioning at 8-20 months and he has eating difficulties but is still orally fed. He has global developmental delay, hypertonia, he also wears Pedro shoes with splints, cortical visual impairment, macrocephaly, autonomic nervous system dysfunction. Jacob can say some words but cannot string a full sentence together and he is also doubly incontinent. Recently, Jacob has been experiencing more central cyanosis (blueness around the mouth and face) Jacob is unable to regulate his temperature, which means if it drops below 34 he has to be taken into hospital to have a Bair Hugger placed on top of him. We have now been informed that this could potentially be fatal and feel we should do everything possible to irradicate this possibly. Jacob is a very happy little boy that lives his life to the absolute fullest. He has a 9 year old sister that he enjoys playing with as much as they can, both of them are unaware of the severity of Jacobs illness due to us trying to keep normality. We are supported by children’s hospice southwest and we regularly visit them when we can. We would like to raise as much money as we can to purchase a SATS machine for Jacob at home, this machine does his temperature, blood pressure and oxygen saturations all in one.

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