TVLSE, Oklv. – The past few months for the Cantrell family have been tumultuous and testing to say the least. Trent (Mvskoke) and Madison Cantrell are parents of two children, their two-year-old daughter, Rosie and their five-month-old son, Asher. Although Asher Cantrell is just an infant, he has already seen his fair share of health issues. These issues have left the Cantrell family scrambling to receive a diagnosis, campaigning for the opportunity to receive treatment, and advocating for other families with children diagnosed with rare diseases.
Asher Cantrell was born at five pounds. Although that is considered somewhat small for a newborn, he did not initially exhibit any concerning adverse health symptoms. According to Trent Cantrell, he described his newborn son as quiet and happy, always laughing and smiling.
That all changed on May 17 when Asher Cantrell began exhibiting signs of labored breathing. After calling Asher Cantrell’s pediatrician at five o’clock in the morning, it was recommended that he go straight to the emergency room. The initial diagnosis was pneumonia, which can be deadly for infants. This however was puzzling because Asher Cantrell did not exhibit any pneumonia symptoms in the weeks preceding, his labored breathing only began that night. The Cantrells would spend the next month in the hospital before Asher was diagnosed with a rare neuromuscular disorder called Spinal Muscular Atrophy with Respiratory Distress Type 1 (SMARD1).
According to Trent Cantrell, nearly fifty tests for various muscular diseases were taken before doctors were able to determine SMARD1 to be the culprit. Until that point, doctors scratched their heads as to what the diagnosis could be, never in their wildest dreams did they think it was something as extremely uncommon as SMARD1. To date, there have only been 60 or so cases reported in scientific literature. Asher Cantrell’s diagnosis is one of the first ones documented in Oklahoma.
Asher Cantrell’s SMARD1 is associated with Spinal Muscular Atrophy (SMA), a rare genetic condition that affects the nervous system, which can affect muscle activity like speaking, walking and breathing. SMARD1 specifically can cause muscle paralysis, causing a sudden inability for the lungs to expand and take in oxygen. Asher Cantrell received breathing treatments through a breath ventilator. When it was determined that Asher Cantrell was unable to breathe on his own for longer than just a couple hours, it was apparent something was not right. That is when a thoracoscopy was conducted, a procedure that allows doctors to look at the space inside the chest. That is when it was clear Asher Cantrell had SMARD1.
Fighting for Treatment
When the Cantrell family finally learned what disease their baby was struggling with, it was devastating news to say the least.
“We took the whole day to mourn and be sad,” Trent Cantrell said. “We found out pretty quickly there was a clinical trial in Ohio. We did not let ourselves stay down for too long because we wanted to help Asher.”
The clinical trial Trent and Madison Cantrell learned about was the Phase I/IIa Gene Replacement clinical study conducted at the Nationwide Children’s Hospital in Columbus, Ohio. The hospital is one of America’s largest not-for-profit, free-standing pediatric healthcare systems, and the only hospital where some form of SMARD1 treatment is available. The Cantrells learned about the SMARD1 clinical treatments through smashSMARD, a nonprofit dedicated to finding a cure for the disease.
Although Asher Cantrell was an eligible candidate to be admitted to Nationwide Children’s, he was initially rejected due to his age. The hospital told the Cantrells they were only accepting newborns without symptoms. That is when the online push to get Asher Cantrell admitted for treatments began.
Tulsa’s KOTV News on 6 broke the story on June 21, followed by coverage from KOKI Fox 23. Madison Cantrell led the charge in sharing their family’s desperate situation on Facebook.
Mvskoke Media previously made a Facebook post on June 22, sharing the Cantrell’s story and their plea to admit Asher for clinical trials at Nationwide Children’s Hospital. That post was shared over 1,000 times, and garnered several hundred comments, most tagging the Nationwide Children’s Hospital’s official Facebook page.
After a week had passed since the Cantrell’s story started circulating online, it was announced that Asher was approved for clinical treatments from Nationwide Children’s. The hospital was even able to deliver the medicine to Tulsa free of charge, which will save the Cantrells time and travel expenses.
“We don’t know what caused them to change their minds, but everything got approved,” Trent Cantrell said. “It was a lot of hoops to jump through but the drug is here.”
Trent Cantrell’s advice for families with children who have been diagnosed with rare diseases is to stay informed and have faith.
“Do research as soon as you find out. See if there are any clinical trials,” Trent Cantrell said. “Don’t take no for an answer. God does not always do things in the way we visualize it but we just have to trust that He’s working and He’s doing things. It’s an absolute miracle that Nationwide decided to say yes (to treatment). Hold on to your faith and keep pushing.”
A GoFundMe crowdfunding web page has been set up for the Cantrell family. Donations will help with medical, food and family expenses at this time. For those who would like to donate, visit gofundme.com and type in “Support Cantrell’s Fight for Asher’s Life” in the search bar.
The Cantrells expressed that they are grateful for guidance and support from smashSMARD Founder Brittany Stineman and her nonprofit organization.To learn more about smashSMARD and their efforts to help families affected by SMARD1, visit their website, smashsmard.org.
