Nora's Fight Against Batten Disease
$210 raised
1% of $30k goal
10 contributors
4 Years running
Nora was born on April 21. 2005. She was born healthy and hit all her mile stones, in fact she on the Wexler testing at school she was considered a genius. She loved to sing, dance, read, watch movies and play outside. On June 25 2008 Nora was ...

My name is Nora, I was born on April 21. 2005. I was born healthy and hit all my mile stones, in fact I was on the Wexler testing at school and was considered a genius. I loved to sing, dance, read, watch movies and play outside. On June 25, 2008 I was diagnosed at the age of 4 years old with Late Infantile Batten Disease. This is a dreadful disease that robs children like me of our lives. I have regressed back to a baby. I have had several different types of seizures that has made the disease progress bounding me to a wheelchair, almost completely blind, barley able to speak and fully dependant on my Mom, My name is Jessica, I am Nora's Mom. I am a single parent with 3 children. As Nora gets older and her needs increase, it becomes harder to provide everything that she needs. I am that I can to get my baby a stem cell transplant. This is a very expensive procedure, but it has shown to effective in fighting this 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.

Any donation even a dollar is much apprecaited. It all adds up. Please if you can, help to keep Nora as happy, comfortable and "healthy" for as long possible. Every day is precious and should be lived to the fullest. I want to thank you all in advance from the bottom of my heart. Being able to provide for my daughter is the most important thing in my life.

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