Tenille Ellie’s ALS Fund

STEM CELL TREATMENT FOR TENILLE ELLIE (Nee KOEBERG)

Diagnosed with Amyotrophic Lateral Sclerosis (ALS)

We need your support to raise funds to provide Tenille the urgent treatment she needs to curb her progressive disease.

2012 commenced on both a great and "somber" note for Tenille – She noticed a twitch in her right hand in 2011, thought nothing off it until January 2012. She was scheduled for various tests amidst discovering that she was expecting her first child.

An MRI scan revealed her diagnosis of upper and lower Motor Neuron Disease, also known as Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig disease. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those individuals with ALS survive for 10 or more years.
According to her doctor she wouldn’t carry her baby to term; however 9 months later Tristan was born. The toll pregnancy took on her body was quite disastrous though. The doctor advised that she would be confined to a wheelchair at this point, battling to breath on her own and needing fulltime care.

As a testament to her positive outlook on life, her sheer courage in tackling this disease head-on, whilst raising her beautiful child, she is still walking, albeit very slowly and she is fiercely independent. Through alternative therapy Tenille has kept a healthy balance, both spiritually and physically, which has further resulted in her ability to curb the progression of her disease. However, she now needs medical intervention as her muscle strength is rapidly diminishing impacting her ability to move.

We need more advocacy, research and education in this country and on this continent. There are various stem cell therapy clinical trials underway which has led to new insight into improving the quality of life of motor neuron disease sufferers and there is great hope that a cure would be found in the near future. These are however all based in the United States and Europe and the treatment is not available to South Africans neither at this point nor soon.

Tenille’s tenacity and her ability to curb the progression of this disease has led to her recently being accepted for stem cell therapy scheduled for August 2015, at the Wu Medical Centre in Beijing, China.
This five-week treatment regime will however cost $40,000 or approx. R450,000; as she needs a battery of treatment. This regime includes stem cell activation and proliferation treatment; daily IV of neurotrophic factors and medicines used to stimulate the production of the body's own stem cells; Rehabilitation; Physiotherapy; Occupational therapy; stem cell implantation; neural stem cell injections delivered via lumbar puncture into the cerebral spinal fluid in four separate injections and mesenchymal stem cells implantations by IV. This is no walk in the park.
The treatment will help her regain neural and muscle function and curb the progression of the disease - hopefully until we in Africa have access to the treatment that could help so many suffering from neural diseases, improve the quality of their lives.

Tenille needs our support to help raise funds that will enable her to receive this lifesaving treatment. Her disease is rapidly progressing despite all her great efforts – she needs this intervention soon. Your contribution, both big and small, can make this a reality for her.
Tenille is such an inspirational being, she is so positive, despite her illness; to do nothing would be a travesty.

There will be full transparency and we will keep you abreast of this fund raising initiative and her progress.

We thank you for being the difference.