Cody is now 14 years old, Dean is 12 and Sachiko is 10 years of age and all have Bardet-Biedl. All attend Special Day Class programs in California. The syndrome has affected each of them in very similar ways and also in very different ways.
Cody is the talkative one and has the sweetest disposition as do Dean and Sachiko; however, Dean and Sachiko do not have any speech.
They all had their extra digits removed early in life and all are now legally blind, having particular difficulty in dim light.
Cody, being the oldest, is currently getting cane training at his school, and is also doing very well in school with a lot of adaptive curriculum. He has had five back surgeries to correct scoliosis and has full spinal fusion which has limited his mobility.
Sachiko also has scoliosis but because Cody had such difficulty with his surgery, we have decided to wait awhile to try and correct her back. Dean is cute as a bug and has had an enlarged spleen for some time, and hydro of the kidneys, both of which has not caused him much problems, but they are all monitored constantly by several different doctors.
Sachiko was born with vaginal atresia which was corrected early on. She too has hydo kidneys and enlarged liver, also which have not given her much problems. All three have type II diabetes, controlled with medication and their weight has always been a struggle.
Dean and Sachiko love to watch Barney and spend alot of time together forwarding and rewinding DVD's to the exact locations they want to watch.
They are the most wonderful kids in the world !! I wouldn't want them any other way.
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