Please help Mya, who is living with Sanfilippo Syn

• Mya needs lots of expensive durable medical equipment to keep her safe and provide her the most enjoyable life possible. Our goal is to give Mya all of the opportunities that able bodied kids enjoy, but we need your help to make it happen.

WHAT MYA NEEDS YOUR HELP WITH

Mya is diagnosed with Sanfilippo Syndrome Type 3B. Mya’s physical and mental conditions require things like safety gates, safety locks, custom wheel chairs, custom car seats and all sorts of other occupational safety devices. Mya’s treatment also involves frequent car trips over an hour away to see her team of specialists.

Mya’s mother, Melissa, has recently purchased her very first home for Mya’s family. Mya would greatly benefit from a fenced in backyard, so that she can safely play outside just as any child deserves. Her impulses and behavioral tendencies require extra care and safeguards to keep her safe and happy. This will allow the family the opportunity to make updates and retrofits to the house to improve Mya’s safety 

WHAT IS SANFILIPPO?

Sanfilippo Syndrome, also known as Mucopolysaccharidosis Type lll, is a rare genetic condition that causes brain damage. It is a type of childhood dementia which causes aggressive behavior, hyperactivity, seizures, deafness, loss of vision, difficulty sleeping and progressive dementia. 

Sanfilippo Syndrome is caused by a lack of an enzyme that normally breaks down and recycles a large, complex sugar molecule called heparan sulphate. The life expectancy is 10-20 years. As Sanfilippo progresses, the ability to speak, walk and eat are slowly lost. There is no treatment or cure for MPS3. The disease is commonly described as Alzheimers and Lou Gehrig’s Disease which only impacts children. 

MYA’S JOURNEY TO FIND ANSWERS…

Mya was born December 15th, 2008. We were anxiously awaiting our beautiful baby girl, who had no complications during her birth and entered the world as a beautiful and perfect bundle of joy. 

As a toddler, Mya hit all of her milestones and even started walking at 10 months old! It wasn't until she was 3 we noticed changes with her social and emotional development. Outbursts. Behavioral Struggles. Sleepless nights. This is where my endless fight for my daughter my daughter truly began.

Mya began counseling at 3, but it was ultimately not effective. With time, her behavior and outbursts intensified and she began seeing a psychiatrist. On her 6th birthday, Mya was diagnosed with ADHD, put on medication and should outgrow most of her behaviors. The medications did not help, and the side effects were worse than the symptoms.

And so began a revolving door of medical interventions… doctors and specialists that would become the normal. Mya’s new doctor was too focused on medication so at 8, Mya saw a new psychologist. Her social skills and response to the doctor progressed and was diagnosed with autism. After 2 years with the doctor, Mya continued to regress emotionally, behaviorally and sleepless nights became worse. Even remaining awake for 36 hours.

As her mother, I knew in my heart there was a bigger issue at play and Mya deserved answers. I began looking for a neurologist and her new doctor had a new approach to medications. The medications helped with aggression, behavioral outbursts, impulses, focus and sleep. My sense of relief was short lived, as Mya continued to regress.

Desperate to find answers, I began to research genetic diseases online and referral to a geneticist. There were plenty of diagnoses that seemed plausible, but never in a million years did I expect a FATAL diagnosis.

August 29th, 2018, Mya was diagnosed with Sanfilippo Syndrome Type 3B. We finally had answers after years, but this was not an answer any parent could ever be prepared for. Now we understood why Mya kept regressing as she is getting older.