Rank: Administration
Groups: Administration
Joined: 6/4/2008(UTC) Posts: 1,323 Points: 614
Thanks: 40 times Was thanked: 26 time(s) in 10 post(s)
|
Beg Family's 3 precious girls
What is worse than looking in to the eyes of your three beautiful daughters and knowing they are going to die soon.
 Abeerah, Khansa and Zahra are diagnosed with Sanfilippo Syndrome also known as MPS-III type B.
MPS is a rare, fatal genetic disorder. Children affected with MPS are missing an enzyme that breaks down strings of a complex body sugar called heparin sulfate. The partially broken down sugar, or muccopolysaccharide, accumulates in the brain and other organs causing progressive damage.
Children with Sanfilippo appear normal at birth and will develop normally for the first year or two, but as more cells become damaged symptoms begin to appear. Eventually the build up of muccopolysaccharides causes hyperactivity, hearing loss, sleep disorders, loss of speech, mental retardation, blindness, dementia, and finally death.
Children with this disorder begin life normally.
  The Beg girls were bright and happy babies and toddlers like any other normal children.
The change seen in children with Sanfilippo syndrome occurs most often very gradually, but the disorder tends to have three main stages:
STAGE I The child begins to lag behind his peers in development with speech delay being the first indication of a problem. The child also begins to display difficult behaviors related to a decrease in attention span, development of hyperactivity and a decrease in understanding of language. Hearing changes can also occur in this stage. Common physiological symptoms of this stage include frequent diarrhea, cold and congestion, and ear infections.
   STAGE II The disease then progresses to increasing behavioral disturbance including temper tantrums, hyperactivity, destructiveness, aggressive behavior, pica and sleep disturbance. As affected children have normal muscle strength and mobility, the behavioral disturbances are very difficult to manage. The disordered sleep in particular presents a significant problem to care providers.

MPS kids lose a little more of their life each day

STAGE III In the final phase of the illness, children become increasingly immobile and unresponsive, require wheelchairs, and develop swallowing difficulties and seizures. Death eventually results from inanition
Children do not live past their early teens.
 At present, there is no cure for Sanfilippo Syndrome.To know about more recent medical conditions and pictures check out the girls' daily Journal. Please visit and sign the guestbook. Your support means a lot to us.
|