SANDPOINT — Jessica and Patrick Rachels of Kootenai have spent the last two legislative sessions advocating for CMV awareness, with some big wins in the House and Senate.
In March 2017, Senate Bill 1060 was signed into law requiring the state Department of Health and Welfare to make available up-to-date and accurate information regarding CMV to health care providers, day care providers, churches, schools and more. Now, a resolution to make June Idaho's CMV Awareness Month has made it through and is waiting on the governor's signature, Jessica Rachels said.
"I am amazed at how God is opening up all these doors," Rachels said. "... Especially in our Sandpoint area, we are so blessed. Our community is so strong and I’m excited to be a part of this."
Natalie Rachels, 12, was born with CMV after her mom unknowingly contracted cytomegalovirus, known as the "silent virus," while she was pregnant. The virus typically shows few, if any, signs and may simply feel like a cold to the pregnant mother. But when a child is affected in the womb, it can cause damage to the brain, eyes and/or inner ears. It can also cause miscarriage or death of the child after it is born. One in 150 children are born with CMV and nearly one in every five who are born with CMV develop permanent disabilities.
Natalie seemed to be a healthy baby, despite failing her newborn hearing test. Her head was a bit small as well and she had reflux issues. When she was two-and-a-half months old, bloodwork confirmed Natalie was infected with CMV. Natalie has cerebral palsy, hearing loss, feeding issues, scoliosis, cochlear and other implant devices, is wheelchair bound, has undergone 10 surgeries and developmentally is only 4 to 6 months old. As of 2017, Rachels said Natalie had cost the state $1.1 million.
Her obstetrician knew Rachels worked in childcare, which put her at high-risk for CMV, but she was not warned about the virus when she was pregnant. For that reason, the Rachels began their quest of CMV awareness, along with another mother in Nampa. Their story was also featured in a book written by a mother in Connecticut, Lisa Saunders, whose daughter was born "severely" disabled by CMV in 1989. Two months after her daughter Elizabeth turned 16, she had a seizure and never woke up.
In her book, Saunders wrote that shortly after Elizabeth's death, she had a nightmare that she visited a support group of new parents of children with CMV. They suddenly looked at her and said, "Why didn't you do more to us about CMV?" After waking up in a cold sweat, she wrote, Saunders knew she had to make CMV awareness her life's work. And she discovered she wasn't alone, as the Rachels have dedicated their lives to advocating awareness as well.
In their quest for awareness, the Rachels and their colleagues are fundraising to put together goody bags for families of children enrolled in local Early Head Start programs. The main focus is to put together 40 for the Sandpoint Early Head Start, but they hope to raise enough funds and donations for the Early Head Start programs in Rathdrum and Coeur d'Alene as well, bringing the total to 145 families.
Each goody bag will consist of specially-made CMV awareness items including bracelets, flyers, and a "Once Upon a Placemat" CMV coloring book, as well as crayons, toothbrush, small bars of soap, mini hand sanitizers and, of course, bags to put the items in. To create goody bags for the 40 local families, the cost is estimated at $468.35, and the cost for all 145 families is estimated at $1,420.70. Rachels said they would also like to provide at least one of Saunders' books, "Help Childcare Providers Fight CMV," to each of the centers.
To raise funds for the goody bags, the Rachels will hold a five-hour walkathon on the Long Bridge from 10 a.m. to 3 p.m. on May 5. For information, contact Rachels at firstname.lastname@example.org or 208-255-9892.
Donations can also be made at P1FCU, 476864 Highway 95 in Ponderay. Checks can be made out to Jessica Rachels for Idaho CMV Advocacy Project. Donations of the non-specialty items, such as small soaps, hand sanitizer, crayons and toothbrushes are welcomed as well by contacting Rachels at the email or phone number listed above.
Mary Malone can be reached by email at email@example.com and follow her on Twitter @MaryDailyBee.