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S l BEANIE S S l (DRY  
by Mary Margaret (Iolliver   iii,
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I They were then referred to a devel- l
Hurler S syndrome opmental specialist and that was the E
_ • Il •Il d first time they heard the truth about  
Is an In erl e their only child: Stefanie had Hurler s E
Syndrome. l
° ° I . . . . .
dI$°rder• sllefunle S After the initial diagnosis confirming  
the illness, the Matthews were shown  
body was no, Pro' photographs of children with this syn- I
• drome. "The children were deformed,  
duclng un enzyme the were ver short with bent arms,
Y Y
. and were described as looking like gar-
she needed to dlgesll goyles,” said Luke. “The prognosis was
that she would die before the age of l0.
complex $ug¤rs• They were 95 percent sure of that.” ,[;_” ’
Hur1er’s Syndrome is an inherited
en you see five-year-old Ste- disorder. Stefanie’s body was not pro-
fanie Matthews with her ducing an enzyme she needed to digest
boundless energy and smil- complex sugars. Eventually, fatty tissue
y ing face, it is hard to imagine the in- would build up around her organs and
A credible struggle she has been through. destroy them.
And unlike most five- ear—olds, she is a Luke and Cam knew somethin had l
Y S
medical pioneer. to be done. But what? Both parents are ,
I Stefanie’s ordeal began when her educated and have a “we won’t give up” l
A parents, Luke and Cam Matthews of attitude. Cam is a school teacher and  
  Owensboro, took Stefanie to the doc- Luke works with the computer pro- i
l tor for her 15-month-old check-up. gram for the school system.  
I s'°"“"°· "°"‘;:"2° The doctor was concerned because her Stefanie had already had surgery to ’  
o · , . . . .    
mn"'; ::I:“Ie.i head was enlarging more rapidly than place a shunt in her head. Sometime      
child by hor donors 1t should. He referred them to a neuro- during the initial diagnosis, one of the {  
"""‘:‘|;"‘""“':h:° surgeon. doctors consulted had mentioned a l A
wo: aver s , ,, . , . . Y  
Pioneer In me use ‘l was scared to death, said (iam. bone marrow transplant as a possible { ‘     Y
of ¤ bono morrow "He said, according to the CAT scan, treatment option, but said he would not l
2 *"“"’|"“'“ '° "°' her enlarged head might be due to hy- recommend it for this particular illness. l‘
W Ion! dlsouso. Photo d _ I I H ld _ 1 R . . I
i by Funk Abrams, iocep ia us. e to us s ie would efusing to give up hope, Luke and I
l Qwonsboro. need a shunt." Cam talked to their pediatrician and Q
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I2 lxvritiirky .·\lllIlllI\I$ Sp;-ing 199]