Joey W's quilt   (Quilt Completed)
Finished photosComing soon...
Quilted by: Pat
Joey was born with an elastin gene mutation which causes him to have supravalvular aortic stenosis & pulmonary branch stenosis, this affects both the heart and the lungs. The prognosis was Joey wouldn't live to be 3 however, he has just turned six. Recently we have been advised Joey needs to have open heart surgery to attempt to save his life although the risk is exceptionally high as theres only a 1 in 10 chance of survival. Without the efforts of this surgery Joey's time is running very short as his heart is now distressed and becoming very tired. Joey needs constant supervision as he turns blue and can't control his body temperature. Joey is monitored closely throughout the night also as he is very restless and this too can make him exceptionally tired and clammy. Joey can't be like his siblings as he can do no physical activity at all and can only walk a few steps without becoming breathless. He attends school but only for half a day as this is too much for him but he's a very happy boy always laughing and smiling. Joey is under constant 3 monthly observations in Leeds with his cardiologists as he needs monitoring closely, he is at risk of sudden death due to the nature of the heart conditions. Joey shares this condition with his older sibling Harley but Harley seems to manage his well. Joey has 4 other siblings who are all well and make a fuss of him to keep him safe and well. Joey looks well, barring being pale, and is a very happy little boy. Joey also has a right-sided inguinal hernia which he has to live with as the risk of a procedure could be detrimental to him.