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Benefit concert supports local child suffering rare disorder

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Benefit concert supports local child suffering rare disorder

SPENCERVILLE - Ambush will be playing for a cause in Spencerville on Friday, August 31. The concert will take place at the Spencerville Legion at 8:00 p.m. Proceeds from the event, which is a joint effort between the Spencerville Legion and Déjà vu Thrift Store in Cardinal, will go towards ongoing Legion maintenance as well as to a fund put in place to aid a local family dealing with a devastating diagnosis.

Four-year-old Emma Rain Doyle suffers from an extremely rare condition known as Warburg Micro Syndrome. Warburg Micro Syndrome is characterized by optic, nervous system, and endocrine abnormalities. It is a rare autosomal recessive genetic disorder. It is primarily characterized by problems with the eyes and with the growth and development of the brain, resulting in neurodevelopmental delay. Affected children have severe intellectual disability, and they experience delays in reaching, or fail to reach, normal developmental milestones. They may also have microcephaly, a condition that indicates that the head circumference is significantly smaller than would be expected based upon an infant's age and gender.

Though Emma Rain was born a healthy baby and appeared normal to doctors and her family. Her parents started to notice signs of something being off at around six-weeks-old.

"I noticed that the inside of her right eye, which is normally black, went white almost overnight, so I took her to I believe it was seven different doctors; all of whom told me that I was just a new mom being paranoid and anxious and that nothing was wrong with Emma Rain. I went to Brockville General Hospital Emergency the next time. When we got our doctor, she introduced herself as Dr. Chawla. She looked at her eyes and instantly said she has cataracts. In less than a week's time she had her first double cataract surgery removal. With this she also had her lenses in her eyes removed, and that's when they found optical nerve atrophy in her eyes as well," said Emma Rain's mom Kyrie Doyle of the onset of her daughter's symptoms and treatments.

Emma Rain is Intellectually disabled and has not progressed past the average intellectual state of a four-month-old. She suffers from abnormalities on both her hands and feet, and experiences feeding difficulties.

Emma Rain's parents work opposite shifts to ensure their daughter has round-the-clock care, and rely on a team of many medical professionals, including nurses, neurologists, geneticists, grievance counselors and physical therapists to care for their daughter's needs.

Emma Rain will undergo her next surgery close to Christmas this year. Funds raised at the concert will help to offset the costs of everyday expenses and travel for the family while they care for Emma Rain and their other two children, 8-year-old Linzi and 18-month-old Jeffrey.

"We didn't ask for this fundraiser to be completely honest, but the timing is incredible. It's hard to put into words really; I guess the best way to explain it is that everything costs more when it involves our family. We find ourselves eating out more than we should because we spend a lot of time traveling. We have luxury items like cell phones because we need to always be in touch, and wear and tear on our van is always an issue," said Emma Rain's dad Jeff Doyle of the heightened cost of living with a special-needs child.

"Hopefully this fundraiser can help offset some of their costs. We found out about this family and knew we wanted to help and decided that the community should show them the love," said Déjà vu Thrift Store owner Karie Smail.

For more info on the event, visit www.facebook.com/events/302320246978205/.

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