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Meet Sam Walsh. Sam is a brave and magnificent 2 year old boy, much loved by his parents Teena and John Walsh, and his siblings Tom (4) and Eddie (4 months).
In March this year Sam was diagnosed in an extremely rare and aggressive genetic neuro-degenerative disease called Infantile Neuroaxonal Dystrophy (INAD). It is estimated there are approximately 200 kids with it worldwide. INAD is described as an aggressive mix of Parkinson’s and Alzheimer’s in infants. There is currently no known treatment or cure. This horrific disease threatens to take Sam's life in his first decade – a heartbreaking proposition beyond comprehension for his family.
Sam is a brave little lad who has not been able to learn to walk or speak and has limited eyesight. Despite these challenges Sam is fighting to learn new skills. He is currently learning some sign language to communicate and trying hard to build muscle and walk assisted. He is a loving, affectionate little man who enjoys music and playing in the water.
There is a glimmer of hope… Sam has been accepted into a clinical trial in San Francisco, California where he will receive experimental treatment to try and slow the progression of the disease in the hope that a cure is found soon. Currently, the Australian health system can only offer Sam palliative care for the balance of his life.
Sam's participation in the clinical trial is expected to last approximately 13 months. To participate Sam needs to travel to San Francisco for 3 visits over the next year. Because of the rapid progressive nature and the severity of the disease time is of the essence. Sam starts the trial on the 29th May.
Any financial support you can provide will go towards travel to the USA and caring for Sam. Teena and John will be travelling with their 3 children, which comes at great expense. The Walsh family will be extremely grateful for any financial assistance to ensure Sam has the best shot at prolonging his life whilst we work hard to find a cure for this shockingly rare and devastating disease.
Please help us help Sam who is loved beyond measure by us all.
In March this year Sam was diagnosed in an extremely rare and aggressive genetic neuro-degenerative disease called Infantile Neuroaxonal Dystrophy (INAD). It is estimated there are approximately 200 kids with it worldwide. INAD is described as an aggressive mix of Parkinson’s and Alzheimer’s in infants. There is currently no known treatment or cure. This horrific disease threatens to take Sam's life in his first decade – a heartbreaking proposition beyond comprehension for his family.
Sam is a brave little lad who has not been able to learn to walk or speak and has limited eyesight. Despite these challenges Sam is fighting to learn new skills. He is currently learning some sign language to communicate and trying hard to build muscle and walk assisted. He is a loving, affectionate little man who enjoys music and playing in the water.
There is a glimmer of hope… Sam has been accepted into a clinical trial in San Francisco, California where he will receive experimental treatment to try and slow the progression of the disease in the hope that a cure is found soon. Currently, the Australian health system can only offer Sam palliative care for the balance of his life.
Sam's participation in the clinical trial is expected to last approximately 13 months. To participate Sam needs to travel to San Francisco for 3 visits over the next year. Because of the rapid progressive nature and the severity of the disease time is of the essence. Sam starts the trial on the 29th May.
Any financial support you can provide will go towards travel to the USA and caring for Sam. Teena and John will be travelling with their 3 children, which comes at great expense. The Walsh family will be extremely grateful for any financial assistance to ensure Sam has the best shot at prolonging his life whilst we work hard to find a cure for this shockingly rare and devastating disease.
Please help us help Sam who is loved beyond measure by us all.
Co-organizers9
Caroline Snow
Co-organizer
Cassandra Bloxsom
Co-organizer
Catherine Walsh
Co-organizer
Clare Walsh
Co-organizer