Baby with rare disorder gets help from mom's alma mater



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Tanya Maynard, BHS Class of 2004, watches as former teacher Tonya Angwin holds her daughter Makenna during a visit to the school last week. Angwin and the National Honor Society presented Maynard with a check for $850 to help cover Makenna’s medical costs. Meghan Siegler. (click for larger version)
May 20, 2009
BELMONT — A former Belmont High School student and her 3-month-old daughter got quite the surprise last week when they came back to visit a former teacher – and left with a check for $850.

Tanya Maynard, Class of 2004, brought daughter Makenna to BHS for what she thought was a visit with her former teacher, Tonya Angwin. What Maynard didn't know was that Angwin, who is the National Honor Society advisor, had arranged to give her the money that was raised during April's NHS Raider Run. The money was originally going to go to the Children's Hospital at Dartmouth, until Angwin realized there was a way to make a more personal donation.

"The more I thought about it, we have a former student with a very ill child who uses CHaD," said Angwin, who keeps in touch with Maynard via Facebook and her mom, Sue Gilman, who works in the school's food service department.

Makenna was born with a rare chromosome deletion disorder. Officially called 4Q 21.23 Q23, the disorder is so rare that it doesn't have a name. Maynard, who now lives in Hudson with her husband Dave, said she's only found two other children with it – one in Canada and one in Virginia.

The disorder has forced Makenna to breathe through a tracheostomy tube and eat through a feeding tube. She's also been through surgery for a blocked intestine, which Maynard said she wouldn't have survived without.

Makenna seems to be taking it all in stride, barely flinching during a routine trach suction.

"She is such a happy baby," Maynard said. "She's very easygoing."

Long term, Makenna is expected to have growth restrictions and developmental delays and is at risk for phototoxicity. She weighed 3 ˝ pounds at birth and at 3 months weighs 9 pounds.

Maynard said she began having complications with her pregnancy when she was 20 weeks along. She had excess amniotic fluid, and the baby stopped growing in the third trimester. Ultrasounds showed that Makenna had webbed toes, which can be a sign of a chromosome disorder, as well as the intestinal blockage.

At 35 weeks, Maynard had an amniocentesis, because her doctors wanted to know who they should be taking care of – mom or baby – when it was time for delivery. Three days later, Maynard went into labor.

Makenna spent the first three months of her life at CHaD and just came home a couple weeks ago. Maynard said she was happy that Makenna could come home, but she knew she'd miss the support she had at the hospital, particularly since her husband is a professional racecar driver and is frequently on the road.

"They helped me get through a very hard part of my life," Maynard said of the CHaD staff.

Maynard and Makenna will continue making the trek to Lebanon several times a week. Maynard said she the doctors don't know how long Makenna will have to stay on the trach and feeding tubes.

Meanwhile, Makenna's prolonged hospital stay and subsequent visits have prompted Maynard to change her career path. She's now planning to go to school to be a licensed nursing assistant.

"She's inspired me in so many ways," Maynard said of her daughter. "She's a little fighter."

Maynard said she was grateful for the money that NHS donated to her family and will likely use it either to pay medical bills or will put it into a savings account for Makenna.

"The bills are rolling in," said Maynard, who has primary and secondary insurance coverage. "Nobody knows who's paying for what."

Angwin and several NHS students who were on hand to present Maynard the check said they were happy to help.

"We all thought it was really nice to be able to give it to someone we know," said NHS President Renee St. Germain.

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