“Aavah’s Angels” hold fundraiser for Mangus baby

A group of good-hearted fifth-graders at Lovell Elementary School were so moved by the plight of their classmate’s baby sister that they decided to hold a fundraiser to help the baby and her family in their time of crisis. When Alyssa Rael, Sam Cornia and Hailey Rael learned that their classmate Dallen Mangus’ little sister Aavah suffered from complications of a rare disease called heterotaxy, their first instinct was to help. Though neither of the Rael sisters has actually met little Aavah (not recommended by doctors), they are cousins. With the help of Cornia, who is student council president, the trio brought the idea to the student council asking them to support their efforts.[caption id="attachment_9639" align="alignright" width="242"] “Aavah’s Angels” (front row) Hailey Rael, Sam Cornia and (back row) Alyssa Rael and Dallen Mangus are organizing a fundraiser at Lovell Elementary School for Aavah Mangus who suffers from a rare medical condition called heterotaxy.
Patti Carpenter photo[/caption]“We’re hoping she will be cured,” said Alyssa. “If she is cured, she will be the first ever.”“We’re hoping she lives to be 100,” added Cornia.The students have already placed a donation jar in the lobby of the school and the fundraiser appears to be going very well.“We’re thinking of the family and how hard it must be for them,” said Hailey. “The money will help them, but they need our prayers, too.”The collection jar will remain in the school lobby until February 14. The students hope to raise $3,000 for the family. They are also considering placing cans at the checkout counters of local businesses.Aavah was diagnosed with the disease prior to her birth and has endured many complications of the disease. Heterotaxy causes certain organs in the infant’s body to form on the opposite side of the body from where they would normally form. For example, the heart forms on the right side instead of on the left side of the body. It is also known to affect the development of the heart and other major organs like the liver, lungs, intestines and spleen. As is common with many babies, Aavah required a heart transplant, which she received at only three months old.Most recently, little Aavah has developed a rare blood disease called warm and cold agglutinin. She is currently being treated for the disease at Children’s Primary Hospital in Utah.[caption id="attachment_9638" align="alignright" width="214"] Little Aavah Mangus is spending her Christmas in Children’s Primary Hospital in Utah due to complications caused by a rare medical condition.[/caption]“Nobody knows why Aavah got this or how she got it,” said mother Amber Mangus. “It’s so rare the physicians are learning as we go. Her team at Primary’s is reaching out to several other facilities and experts trying to see if there are any other treatments out there for this blood disease that have been successful.”The disease affects Aavah’s red blood cells, which are continually breaking down, causing her hematocrit and hemoglobin to drop to unsafe levels. Already the disease has required Aavah to require numerous blood transfusions.“She has been needing blood transfusions almost every other day,” explained Amber. “This is also very painful and she is very sensitive to touch. All of this lysing (breakdown of cells) has also caused some issues with her liver, which medical staff are monitoring closely.”In spite of Aavah’s continued medical problems, the family remains optimistic.“We know Aavah is in excellent hands at Primary’s and getting the best care,” said Amber.  “As her mother my heart hurts terribly watching her go through all of this. Just a year ago she was in this same cardiac intensive care unit fighting for her life like she is now.“We don’t know what the future holds for Aavah, but hope and pray she will beat the odds once again and we will be able to bring her home. As for now, they say she mostly likely be in the hospital for several months and maybe longer. We thank all our community for there continued prayers, love and support during this very difficult time.”Aavah has a Facebook page called Prayers for Aavah Jude and a large following of supporters. Several fundraisers have been held to help the family, including several coordinated by this same group of good-hearted children.Dallen Mangus said he was touched by the concern expressed for his family by his classmates. He is also helping with the fundraiser.By Patti Carpenter