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Daniel Alexander

Daniel was born on March 31, 2000 with a bilateral cleft lip (complete cleft lip on the left; incomplete on the right) and palate. Daniel also has popliteal pterygium syndrome*. Daniel's pictures are presented to you by his parents, Tracie & Ken.

5 weeks old. Daniel before lip repair.

daniela01.jpg

Daniel after lip repair surgery. (3-1/2 months old)

Daniel's family includes mom (Tracie), Dad (Ken) and big sister Emily.

This picture was taken right after Daniel's birth.


*Here are the details in a nutshell:

Popliteal Pterygium Syndrome is an autosomal dominant genetic disorder occurring in approximately 1 out of every 300,000 births. It is extremely rare.

The most common birth defects associated with this syndrome are: (please forgive me if these don't make a whole lot of sense, I'm translating medical terminology and am not sure how good I'm doing)

Cleft lip and palate, salivary lip pits in the lower lip (Daniel did have these too, they were removed at the time his lip was repaired)

Intraoral tissue bands - bands of skin which inhibit full opening of the mouth (Daniel had these, they resolved themselves a few days after birth when he opened his mouth for one LUSTY cry)

Fused digits (fingers or toes - Daniel's small toes are all fused together)

Digital Reduction Defects [missing fingers/toes or fingers or toes that are in place but completely dysfunctional - Daniel's big toes on both feet are dysfunctional, and one - or both, (I'm shooting for just one because I think his right toe will be OK) will need to be removed]

Genital anomalies (cryptorchidism/hypoplasia/misplaced or absent scrotum - Daniel's testicles are attached to his thighs and one teste is not descended)

Popliteal pterygium (webbing behind the knee anchored by a thick cord running from the patient's bottom to the ankle)

Webbing between the legs (Daniels does NOT have this)

Unilateral or Bilateral clubfoot (Daniel has bilateral clubfoot and the worst kind,  something they call equinovarus, which means his feet are turned completely in and the bottom of his feet face entirely inward)

Nail anomalies (there is a pyramidal fold of skin over the toe nails, Daniel has this and we're thinking his nail beds will have to be removed to prevent problems in the future)

Spina Bifida Occulta (I'm still researching this one, but basically I think it is a narrowing of the spinal column.)

Basically, it is inherited from one of the parents and usually the parents exhibit one or more of the above anomalies. What makes this extremely frustrating for Ken and I is that neither of us do and no one in the family does either.

 

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