Medical grant helps Alabaster girl face challenges with grace & courage

Medical grant helps Alabaster girl face challenges with grace & courage
11-year-old Kaitlyn Weaver shows off the shirts she designed. (Source: Shilo Groover/WBRC)
11-year-old Kaitlyn Weaver shows off the shirts she designed. (Source: Shilo Groover/WBRC)

ALABASTER, AL (WBRC) - At 11, Kaitlyn Weaver has had more surgeries than most people have in their whole lives. Right now she's in pain waiting for surgery on her wrist, but the flu is keeping her from getting it.

"It's just too dangerous," says her mom, Michelle Weaver. "She can't even get a flu shot."

The Alabaster pre-teen was diagnosed with a rare blood disorder as a toddler. Since then, she's been diagnosed with multiple medical conditions, that affect her joints, blood, and tissue, but doctors still seem baffled by her case.

"They sent us to Emory, to Vanderbilt, to the blood center in Wisconsin. We've been the NIH (national institutes of Health). We've been everywhere," says Michelle. "Children's of Alabama went out of their way, they truly did. they are a fantastic hospital.  They did everything they could, every test they could think of, but she was truly out of their box."

She still seems to be.

"It seems like every year she is diagnosed with something new," says her mother. They include juvenile arthritis as well as Ehler Danlos Syndrome, which is a disorder of the connective tissues in the body.

That means Kaitlyn has to be careful and has been forced to give up many of her passions because it's too dangerous.

"I used to be a cheerleader," she says pointing to a picture of herself in her room. She had to stop cheering after a dismount from a balance beam caused a bruise, that took over a year to heal.

Kaitlyn has a beautiful voice, but can't sing now because of juvenile arthritis in her jaw. She can't draw right now because of the pending wrist surgery. She goes up the stairs to her room, on her knees because her feet are too swollen for her to walk.

"It's very difficult. She doesn't get to live like a normal child. She doesn't get to do the things normal kids do," says her mom. Many Moms have stickers about cheer camp football teams. Kaitlyn's mom has stickers about magic moments and one that says "kids get arthritis too."

With each diagnosis, comes with a new set of treatments and challenges. The family has a room in the basement with a fridge full of Kaitlyn's medicines and infusions.

"These are all medications that if you don't insurance or you don't have resources to get they are very expensive. Some of them are $20,000 - $40,000 thousand an infusion," says Michelle.

That's where the United Healthcare Children's Foundation (UHCF) comes in. The non-profit has been giving grants to families like Kaitlin's for over ten years. It covers the gap between what insurance will pay for, and what doctors say a child needs.

"We want families that need that kind of financial assistance to be able to get their child the best care possible, whether that's at home or in a facility or in a hospital setting. What we are trying to do is get them the best outcome possible," says Grant Cochran of United Healthcare.

"If not for grants I don't know we'd make it," says Michelle "As a mother, to be told that your child needs something, but that insurance won't pay for it, you pick the treatment over your house payment."

To qualify for the grant, a child must be under 16 and have insurance. The grants are funded partially through United Healthcare and its partners. They are also paid for through donations, and products like toys and calendars, and joke books, written largely by children.

"The jokes are submitted or written by children so you get kids, reading jokes by kids, and all the proceeds go to help kids," says Cochran.

More than 14 thousand grants have been awarded, but they have more money to give. By 2020, UHCF hopes to give their 20,000th grant.

The grant has helped pay for Kaitlyn's casts, wheelchair, and medications, as well as a home nurse to help with her aggressive chemotherapy and infusion treatments.

Through it all, she remains grateful and hopeful. Grateful to her family, her friends, and her church community, who have all supported her along the way. She's especially grateful to God.

"I feel like God has something big for me. He wants me to be maybe an advocate or president, I don't know. But I think he has something big because I always pray to him and ask him why do I have all these things? Why did he give me them all?" says Kaitlyn.

Her family's life revolves around her care. Kaitlyn has a twin brother, who does not have any of the same medical problems.

"He always helps me through the pain and tries to make me happy. I am always down when he gets to do something fun at school and I don't," says Kaitlyn. He says he is going to become a doctor so he can find a cure for Kaitlyn.

She doesn't let any of it stop her zeal for life.  Despite missing more than 50 days of school this year alone, she stays up to date with all of her assignments and is a straight-A student. Her favorite subject – is math.

"I just love school too much," says Kaitlyn.

She also loves to help others. She donated her allowance money to buy blankets for other children to use at the infusion clinic at Children's Hospital. She designs and sells t-shirts to support arthritis research, and slime to support the hemophilia foundation.

"I love to make slime. It makes me happy and it helps my hands as well so it's like therapy for my hands if I don't get to go to therapy," says Kaitlyn.

She has her own secret recipe to make it, and even adds colors and sparkles and scents. She plays with a blue sparkle one that resembles the ocean, but she says it looks like God to her.

When asked if she has any advice for other's facing medical problems she says, "Just keep trusting in God, he will get you through it."

To learn more about the grants, click here. You can also find more about Kaitlyn, including a link to her YouTube channel, here.

Copyright 2018 WBRC. All rights reserved.