Our sweet granddaughter Mya Debra was diagnosed August 29th 2018 with an extremely rare fatal genetic disorder called Sanfilippo Syndrome Type B.  (her type is 1 in 200,000 births)

Sanfilippo or MPSIII is an inherited metabolic disease caused by an absence or malfunctioning of certain enzymes needed to breakdown molecules.  Sanfilippo affects mostly the Central Nervous System and over time the brain cells fill up with the waste that the body is unable to process.  There are 3 stages to this debilitating syndrome and Mya is in stage 2.  

There is no cure or treatment.  However there are clinical trial programs for Sanfilippo.  Nationwide Children's Hospital in Columbus, Ohio is one location.

Our daughter Melissa is Mya’s Mom. Melissa is a hard working single mother to Mya 9, Mason 15 and Evan 2.   Melissa is a very proud, independent woman and she is going to need a lot of love and support during this journey.

Melissa took Mya to pediatricians, neurologists, endocrinologist and psychologists over the last 6 years trying to get answers as to why her daughter was having difficulties with comprehension, focus and emotional/social problems and growth delay. 
Melissa explained to the physicians that there was more going on with Mya than the diagnosis they kept coming up with (ADHD, Anxiety, Oppositional Defiance Disorder and Autism Spectrum Disorder). 

Melissa went to Mya’s neurologist and demanded a referral to   a genetic specialist, which led her to Rainbow Babies and Childrens Hospital in Cleveland where she received Mya’s diagnosis.

Melissa will have traveling expenses and loss time at work due to the many trips she will be making to Cleveland (an hour & 45 min drive) and Columbus (3 hour drive) for  Mya’s upcoming appointments. 

In this next month alone at Rainbows Children’s; Mya will be seeing a developmental delay specialist, cardiologist, getting an MRI of her brain and spinal cord, ultrasound of her spleen, seeing an orthopedic specialist and an ophthalmologist.  Mya also has to have a sleep study done for possible sleep apnea  in which she will have to stay overnight in Cleveland. 

This has been a life changer for our family.   Thank you so much for taking the time to read Mya's story.

 Melissa’s mom and Mya’s Nana

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Deb N John Spencer 
Youngstown, OH

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