Make sanfilippo syndrome known

Make sanfilippo syndrome known

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Stacey Reynolds started this petition to NHS

Skyla-Rae was diagnosed with sanfilippo syndrome at 5 years old it is a genetic disorder that has no cure..... Its a childhood dementia that takes away all there abilities until the point it takes away their life ...

Skyla was undiagnosed for a very long time and all it took was a urine sample..... i am making this petition to help get sanfilippo syndrome known and to be made a standard test for all newborn babies as i think parents should know from birth as I didn't and I have so many regrets. I regret not filming her talking more or running around i didn't know how precious my time with skyla was ! A simple urine sample to determine weather your child has sanfilippo syndrome or any type of mucopolysaccharidosis which is a genetic disorder where there are 7 types of this horrible disease. Skyla has type 3 sanfilippo syndrome... This disease needs more awareness and more support in every aspect... I want a new law called skylas law to make sure my experience with this disease doesn't happen to someone else as I would never like to see someone else go through this.... Then maybe hospitals will be more aware and more educated when it comes to children with this condition comes into them.

We have had many fights with our local hospital about her care and how she should be treated. The amount of nurses and Drs that ask me what is this disease is ridiculous its not something as a mother while my daughter is fighting for her life should have to be explaining.

If I can help at least one child to be diagnosed at birth I will be happy and not let any child go misdiagnosed and suffer like skyla did for 5 years of her life.

Thank you 

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