Feb. 28 marks Rare Disease Day, which brings awareness to the 300 million people around the globe suffering from a rare disease. At the start of the pandemic two years ago, Queen Creek resident Kaylee Bland, now 8 years old, was diagnosed with a rare gene mutation known as IRF2BPL/NEDAMSS.
The disease is so rare that at the time of Kaylee’s diagnosis only about 20 children around the world were impacted. Today that number has more than tripled and is closer to 70. During the pandemic, many of the diagnosed children’s families banded together via the Facebook IRF2BPL parent support group to form the iDream for a Cure project, which funds critically needed research into this rare gene disorder at Baylor University in Texas.
“The Facebook group has been so fundamental in helping me navigate this disease,” said Tanya Bland, Kaylee's mom. “We chat with one another about different opportunities that are happening around the world for rare diseases that might be beneficial to our children. We work with one another to fundraise for the researchers at Baylor working on trying to understand this disease and possibly find treatments and, eventually, a cure. And most importantly, we are each other’s support. Some parents have gone through more and some parents are just starting to notice symptoms happening with their children. It has helped immensely and I’ve even been able to talk with other moms on Facebook Messenger in other countries. It’s been such a blessing!”
IRF2BPL results in the loss of motor skills in young children, eventually rendering them immobile. Kaylee’s family started noticing problems with her development as early as age 2, but it took four long years before the gene mutation was finally discovered.
“I tell people that if you take Parkinson’s disease, multiple sclerosis, muscular dystrophy, cerebral palsy, ALS, add in a little Alzheimer’s and mix it all up, that’s what Kaylee has,” Bland said.
Kaylee has progressively lost her ability to walk and is now wheelchair bound. She also has lost her ability to talk and now relies on a G tube for nutrition. A few months ago, she started having seizures.
Kaylee’s story has touched many hearts locally and friends, family and strangers alike have come together to collaborate and lift the spirits of the Bland family over the past two years. One of those people was Charity Carr, whose own daughter was diagnosed with neuroblastoma in 2009.
“Since our own humbling experience, I took on this pay it forward mentality,” Carr said. “I felt there was so much more I could get involved in and that I had something I could give back. I’ve been very fortunate and blessed to be that person to connect families and volunteers and create opportunities for people to get involved and help in a very meaningful and powerful way.”
Recently, Carr helped bring together a team of general contractors known as McCarthy Heart Hats, a volunteer group associated with McCarthy Building Companies, to finish transforming the Blands’ backyard playground into a wheelchair-accessible wonderland, adding a new wheelchair lift, a specially adapted swing set that Kaylee can enjoy with her siblings, plus new sidewalks, paint and artificial turf.
“We learned about the family’s needs through another healthcare project that we’re working with Charity on, and our team immediately wanted to help out however we could,” said Jeff Baran, project manager with McCarthy. “We hope the finished play space brings Kaylee and her family much joy for years to come.”
Bland homeschools her three children – ages 11, 8 and 6 – and their family motto is “to find joy in every day,” so their newly completed playground, along with three wonderfully imaginative kids, help them meet that goal every day.
To follow Kaylee’s story, visit kayleeskrusade.com or to donate to further research on IRF2BPL, visit iDreamforaCure.org.
