Sammi has always been a free spirited girl who did her own thing. She has always been developmentally behind and we knew something else was going on but we did not know what. Sammi started forgetting basic life skills like putting a coat on, holding a fork, writing her name. We questioned this and were sent to Genetic Testing. The news we received was horrible.

Sammi has Mucopolysaccharidosis Type B. Also known as MPSIIIB or Sanfilippo Syndrome. It is a progressive disease that will affect the brain, spinal cord and anywhere there is soft tissue. Sammi cannot break down sugar molecules called Glycosaminoglycans. Symptoms are Intellectual Disability, Hyperactivity, Dementia and loss of mobility.

There is no cure for this disease or treatment. We were told all we can do is make sure she is comfortable. What makes Sammi a little different is that in addition to the two genes she inherited from us (Mom and Dad) she also made an altered gene on her own within the affected gene. Because Sammi and this disease is progressing differently than in others, we do not know what to expect when.

We have noticed changes in our girl. She does and will continue need to extra care. We will need to adapt and adjust our lives as this disease progresses.

Please help support us as we help Sammi and find a cure.

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