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Kane Donald Degeorgis is a 5 year old little boy who is suffering
from Late Infantile Batten Disease. He was born January 7, 2008. He
was born healthy, with no problems. During his first 3 years 3 years
Kane was doing great, as any normal child. He started walking,
running, and even started potty training early. He was a normal little
boy that got into everything and played all the time. In his third
year of life is when the family noticed that he was having a delay in
his speech, but the doctors said it was okay and that he would just
pick up later. They then noticed him starting to fall and not being
able to get up on his own for a couple of seconds. He was running into
things all the time. This is when the doctor appointments started. He
was having MRI's and all kinds of other tests. Kane was getting stuck
with needles, always being poked by Doctors. Kane then started having
seizures. He was placed in the hospital to have a feeding tube put in,
because he was not eating and had lost so much weight. After about a
week of him being in the hospital he was diagnosed with Batten
disease.
WHAT IS BATTEN DISEASE? Batten disease is a fatal,
inherited disorder of the nervous system that begins in childhood.
Early symptoms of this disorder usually appear between the ages of 5
and 10, when parents or physicians may notice a previously normal
child has begun to develop vision problems or seizures. In some cases
the early signs are subtle, taking the form of personality and
behavior changes, slow learning, clumsiness, or stumbling. Over time,
affected children suffer mental impairment, worsening seizures, and
progressive loss of sight and motor skills. Eventually, children with
Batten disease become blind, bedridden, and demented. Late Infantile
Batten Disease - The onset of symptoms that reach the attention of
doctors is often between 2 and 4 years of age. Prior to this many
parents recognize delayed speech and some children may have been
referred for speech therapy. The major symptoms that bring children to
medical attention are seizures, ataxia [clumsiness] and myoclonus
[jerks, drop attacks]. The epileptic seizures usually herald the onset
of further symptoms. Seizures may be varied and include Myoclonic
jerks which may cause the child to fall, absence attacks when the
child becomes vacant or full “grand mal” convulsions with loss of
consciousness. Alongside these seizures is a deterioration in mental
functions, there is developmental regression [loss of skills e.g.
speech, coordination, continence] and this becomes apparent around
this time or within a few months. Ataxia increases as motor skills
decline. Abnormal limb and body movements can occur and lead to
spasticity (continued muscle contraction and exaggerated reflexes).
Sometimes the muscle spasticity can cause joint contractures. The
examination findings do vary with the age of the child and the stage
of the disease. Initially the children have an ataxic gait [clumsy,
unsteady walk]. As the disease progresses, the ataxia worsens and
children develop frequent myoclonic jerks. Late in the course of the
disease children are unable to walk or sit unsupported (generally
around the age of 4 - 6 years). They lose language and vision
(blindness is usually by 5 or 6 years), although many are able to
recognise their parents’ voices. They respond to their parents and
siblings with smiles. Feeding becomes more difficult with resulting
poor weight gain and frequent symptoms of aspiration [difficulty
coordinating swallowing with subsequent coughing or choking as food
& drink “goes down the wrong way”]. Most children now receive
nutritional support using a nasogastric or gastrostomy tube and this
may prolong life. Death usually occurs in middle childhood between the
ages of 5 and 12 years depending on the speed of disease progression.
There is no cure to for this disease.
We are currently raising
funds for this family, as there are many expenses now and will be down
the road for medical equipment (expenses), renovations for better
access in the small home, a wheelchair accessable van and his Kane's
constant care needed.
Please help this family to keep Kane
happy, comfortable and "healthy" for as long possible. Every
day is precious and should be lived to the fullest. Thank you and God
Bless ♥
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