Teri’s Notebook: Local children need community support
For the Nevada Appeal
The family of 9-year-old Makayla Warner is asking for the community’s help to help the little girl who has suffered from chronic kidney disease since she was 2.
“Since Makayla is a steroid dependent case, she has only gone a few months in the last 7 years without steroids,” her grandmother Kristy Scott wrote on a fundraising site. “Although we are incredibly thankful she responds to steroids when relapsing, the side effects are painful and disheartening.”
Makayla was recently accepted into an 18-month, non-steroidal clinical treatment program, which could potentially provide the medical treatment she needs to live her life off steroids.
Makayla said it would be a “miracle” if she could live without the drugs.
“My life would be different because I wouldn’t have to take medicine in front of my friends and people wouldn’t call me mean names because of what my medicine does to me. I wouldn’t be out of breath as much and I wouldn’t have to miss school a lot. I also wouldn’t have to go into the hospital as much,” she said. “I wouldn’t have as many migraines or stomachaches from my medicine.”
Scott said the family could use help with travel expenses as they make the monthly trip to UCLA for treatment.
“The closest hospital offering this trial is over 400 miles from her home thus resulting in a large amount of travel expenses, which does not include lodging or other costs associated with participating in this program away from home,” she said.
Despite Makayla’s diagnosis with frequently relapsing, steroid-dependent Nephrotic Syndrome, Scott said the Carson City girl remains optimistic.
“She is an extremely smart, straight-A student and a very wise and funny young girl who loves anything girly,” Scott said. “She loves cheerleading and softball, and always takes on a leadership role in everything she does. She is compassionate and loving to everyone, loves animals and has the best laugh ever.”
Her prognosis is unclear, but her spirit is strong.
“The attitude of this amazing little girl fills us with pride,” Scott said. “She does not ever feel sorry for herself, thinks of others well more than she does herself. If you’re unable to donate, please say a prayer for the health and wellness of our princess.”
To learn more about Makala or to donate to her, visit Makayla’s Magic Wand on Facebook or go to https://www.crowdrise.com/makaylasmagicwandchr/fundraiser/kristyscott.
Donations may also be made directly at Bank of America Youth Savings Acct # 501016675038.
Amanda Carvin also wrote in this week to tell us about her nephew Danton, who will be 9 on Christmas Eve.
“He is going through what will most likely be the toughest situation he will ever face — treatment for high grade B-cell Lymphoblastic Lymphoma,” Carvin explained.
She created a Go Fund Me account for the boy’s family and received an overwhelming response.
“I wanted to share with you how very wonderful our small community is,” she said. “It’s absolutely amazing to our family and such a gift. The support has been flowing in.”
She got some bracelets made and started the hashtag #weargreenfordanton and #bedantonstrong.
“It’s catching on,” she reported. “It’s so awesome to see, and he is absolutely stoked on it. The local Montessori school is having a fundraiser this week for Danton including a “Wear Green For Danton” dress up day. “Some friends of ours put Danton’s name in green Christmas lights on their roof with a cancer ribbon. It’s so heartwarming and it’s overwhelming the feeling you feel when (sometimes) complete strangers are willing to show support for your loved one.”
If anyone deserves it though, Carvin said, it’s Danton.
“This kid is pretty dang special,” she said. “He is wise beyond his years — witty, kind, caring and such a little spitfire.”
To find out more about Danton or donate to him, go to http://e.gofund.me/helpDfight.