Kane's Story: Fighting Batten Disease
$790 raised
2% of $40k goal
7 contributors
4 Years running
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. ...

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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