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Although the fundraiser was to help raise money, the main goal was to raise awareness for I cell.

"If she is here for another year or four years, I want her to be well rested and enjoy her activities during the day," Pauline said.

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feeling in the pit of your stomach and the dreaded thought, 'what if she doesn't wake?'"

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Nike Air Max Custom Made

Nike Air Max Custom Made

it was the "size of the top of a pen."

"It was a night to remember," Said Christa. "To see how our Zumba family and the community came together. it was overwhelming to see the amount of support we received."

One type of breathing machine, known as a continuous positive airway pressure (CPAP) machine, can cost in the range of $2,100 to $8,000.

"It is very stressful for a parent to see their child stop breathing throughout the night and during nap time," Pauline told The Compass. "It's a horrible experience having to shake your child so that she will breathe. There is this Nike Air Max 90 Womens Black Croc

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Pauline explained that Amber is experiencing a form of sleep apnea. There is no respiratory specialist in the province or a pediatric sleep lab with the technology to determine Amber's needs.

The International Advocate for Glycoprotein Storage Diseases (ISMRD) vice president Jenny Noble told The Compass through email from her home country of New Zealand she believes there are only three children in Canada with ML (I, II/III and III), but it is possible there are more.

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Dancing for Amber raises

Zumba instructors Amanda Thompson, Christa Clarke and Samantha Smith donated their time to lead the large group.

Amber's sleep issues have been affecting her quality of life, including being tired throughout the day.

It is so rare there are very few statistics available on the disease and there is no cure. Both parents must be a carrier of the gene for a child to be born with it. Neither of Amber's siblings have the Womens Nike Air Max 90

Some 150 people came to support Amber during the event, which included selling tickets on gift baskets, a Zumba dance event and to pick up purchased purple T shirts that read, "I'm dancing 4 Amber."

The Drovers have been advised by a Halifax doctor, Dr. Daniel Hughes, who visits the Janeway Children's Hospital in St. John's every few months, to travel out of province for a proper analysis. They are planning to go to Ottawa to have a sleep Nike Air Max Custom Made study completed.

Businesses and individuals from all across Conception Bay North donated items for draws.

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disease, but at least one is a carrier.

Pauline said she was unaware Amber had I cell until her birth and the nurses noticed she had some "different characteristics."

Purple is Amber Drover's favourite colour. The fundraiser helped raise $12,000 for Amber's future medical and travel expenses related to a rare genetic disease.

Amber, a six year old from Upper Island Cove, was born with Inclusion cell disease (I cell), also known as Mucolipidoses (ML) II. She is smaller than an average two year old. Amber may need a breathing machine and the cost to find out is not covered under the province's Medical Care Plan.

One major symptom is mucosal thickening that narrows the airway over time, which is why the breathing machine may be necessary for those with I cell. Amber's airway is narrow, and her mom Pauline was once told by an anesthesiologist that Nike Air Max 90 Pink And Green

"When Amanda and the other ladies revealed the cheque and I saw the number $12,000, the rest was a blur. I covered my hands over my face and I just kept saying to myself, 'That cannot be $12,000. Oh my God, that cheque says $12,000.'"

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Nike Air Max Custom Made

Nike Air Max Custom Made

Noble explained many of those with I cell will, "pass away early in life due to their severe respiratory issues."

Amber's cousin Terri Lee Bishop planned the fundraiser, but had no idea the turnout would be so big.

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