‘His legacy lives on’: Grandmother who helped create newborn screening law tells history of bill – News-Leader
Posted: March 6, 2020 at 1:46 pm
Buy Photo
Two-year-old Regann Moore lights up as she watches videos on her iPad at home on Thursday, Feb. 20, 2020. Moore has a rare disease known as Krabbe Disease and received a life-saving stem cell donation less than a month after being born.(Photo: Nathan Papes/Springfield News-Leader)
Soon after the News-Leader published a story about 2-year-old Regann Moore,a Springfield child whose life was saved thanks to a newborn screening test, someone tweeted the story toMissouri State Rep. Becky Ruth.
"I bawled my eyes out," Ruth said. "I just cried."
She cried because she knew Regann is alive thanks to the death of Ruth's grandson, Brady.
"I cry and smile when I see these children," Ruth said. "We are always so thankful. For us, we see Brady's death wasn't in vain. His legacy lives on by helping save the lives of other children."
More: Springfield child with rare, deadly disease continues to amaze doctors, family
Regann, who is 2 now, was diagnosed right after she was born withKrabbe Disease, a rare metabolic disorder that must be diagnosed at birth and treated as soon as possible with a stem cell donation.
The newborn screening is important because babies with Krabbe Disease appear healthy at birth. Signs something is wrong usually don't appear until it's too late for treatment to be effective.
That is what happened to Brady in 2009. He wasn't diagnosed with the disease until he was 4.5 months old too late for treatment.
Brady died 10 days before his first birthday.
Brady Cunningham died of Krabbe Disease just before his first birthday.(Photo: Courtesy of the Cunningham family)
That's why Ruth and her family fought to get lawmakers on board with making sure all newborns in Missouri are screened for Krabbe Disease.
TheBrady Alan Cunningham Newborn Screening Act was passed in 2009 and screening began in 2012. Ruthsaid her family was OK with the three-year lag because they realized the lab needed time to become equipped to test for the disease.
Missouri is one of just a few states that do the newborn screening.
Brady's law also includes screening for Pompe, Fabry, Gauche and Niemann-Pick diseases. Since then, SCID, MPS I, MPS II and SMA diseases are screened, as well.
Ruth became a state representative in 2015and said newborn screening is her passion.
Her experience with getting Brady's law passed is what led her to seek office.
"It showed me what just a regular everyday person can do and what a differenceyou can make," Ruth said. "People a lot of times complain about politicians and the legislature, but we also do very good things here."
Ruth said her family knows of another child with Krabbe Disease who was saved thanks to newborn screening and a stem cell transplant.
That child is now 4. Ruth said her family and that child's family have a "strong connection."Ruth said shehopes to someday meet Regann's family.
Brady Cunningham was born in 2008. His family is from Campbell in southeast Missouri.
Bradyappeared healthy at birth and was not tested for Krabbe Disease.
Ruth said he started having health problems after about a month and a half. Brady went through "a myriad of diagnoses," Ruth recalled, including acid reflux and seizures.
"Finally my daughter took him to Children's Hospital in St. Louis," she said. "They promised her he wouldn't leave without a diagnosis."
Missouri State Rep. Becky Ruth was moved to tears after reading about Regann Moore, a Springfield child whose life was saved thanks to newborn screening for Krabbe Disease. Ruth and her family encouraged Missouri lawmakers to make sure all Missouri babies are tested for the deadly disease after her grandson, Brady, died from it.(Photo: Submitted by Becky Ruth)
Three weeks later, Brady was diagnosed with Krabbe Disease, which rapidly destroys the nervous system.
"We were told there was nothing they could do," she said. "It was one of the worst days of all of our lives."
Brady was 4.5 months old when he was diagnosed. In order for a stem cell donation to have any chance of being effective, babies must have the transplant within the first month of their life.
Regann, the Springfield child, was given a stem cell donation thanks to an umbilical cord donation.
Thediseaseaffects about one in every 100,000 people in the United States.
"They are missing an enzyme that helps keep their nervous system intact," said Dr. Shalini Shenoy, Regann's transplant doctor. "Because this is missing, they have degeneration of the brain and nervous system. And if you let it progress, it is fatal very early."
Without the stem cell donation, babies die within the first few months, Shenoy said.
"You can't change someone's genetic makeup," Shenoy said. "But when you put stem cells into their bone marrow from somebody else who is normal, some of these cells migrate into their brain and into their nervous system and supply what they are lacking themselves."
It takes some time for the transplant to begin working for the transplanted cells to "settle down" and begin making the missing enzyme, Shenoy said.
"Because of that, the earlier you transplant a Krabbe patient, the more you will be able to rescue them," she said. "You want to catch them before too much damage is done. Once there's a lot of nerve damage, it's not reversible. If I saw a Krabbe patient two months after they were born or four months after they were born when they already had major problems, it's unlikely I'd be able to rescue them too much."
Since the screening and the stem cell transplant treatment are both relatively recent medical advancements, Shenoy said it's anybody's guess what the future will hold for children who, like Regann, were successfully treated with a stem cell transplant early on.
Ferrell Moore holds his two-year-old daughter Regann Moore at their home on Thursday, Feb. 20, 2020. Regann has a rare disease known as Krabbe Disease and received a life-saving stem cell donation less than a month after being born.(Photo: Nathan Papes/Springfield News-Leader)
Regann can't stand on her own or walk yet. But her family is determined to make that happen. She cannot talk but is learning sign language to communicate.
She has regular visits with speech and occupational therapists.
Regann's dad Ferrell Moore got to take her to the circus recently, something the little girl seemed to enjoy.
"She is the joy of my life," Ferrell Moore said. "When I come home, it couldn't be any better to see her and how happy she is to see me."
Read or Share this story: https://www.news-leader.com/story/news/local/ozarks/2020/03/05/grandma-who-helped-pass-newborn-screening-law-tells-story-bill/4954655002/
Continued here:
'His legacy lives on': Grandmother who helped create newborn screening law tells history of bill - News-Leader
- Bone Marrow Stem Cells [Last Updated On: June 24th, 2011] [Originally Added On: June 24th, 2011]
- Stem cells in bone marrow are being used to treat EB [Last Updated On: June 24th, 2011] [Originally Added On: June 24th, 2011]
- Stem cells in bone marrow are being used to treat EB [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- Peripheral Artery Disease: Can Progenitor Cells Help? [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- Bone Marrow Producing Insulin [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- Stem Cells Reversing Endothelial Senescence [Last Updated On: June 25th, 2011] [Originally Added On: June 25th, 2011]
- Peripheral Artery Disease: Can Progenitor Cells Help? [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- Science behind Enhancing Adult Stem Cells for wellbeing [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- Bone Marrow Stem Cell Applications [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- Immune Modulation by Bone Marrow Mesenchymal Stem Cells [Last Updated On: June 26th, 2011] [Originally Added On: June 26th, 2011]
- Expansion of Stem Cells by Valproic Acid [Last Updated On: June 27th, 2011] [Originally Added On: June 27th, 2011]
- STEM CELLS FOR MACULAR DEGENERATION Sam Smith's story.wmv [Last Updated On: June 27th, 2011] [Originally Added On: June 27th, 2011]
- StemLife's First Cord Blood Stem Cell Transplant Recipient [Last Updated On: June 28th, 2011] [Originally Added On: June 28th, 2011]
- Bone Marrow Differentiation to Heart? YES [Last Updated On: June 28th, 2011] [Originally Added On: June 28th, 2011]
- STEM CELLS FOR OTHER USES Interview with Sam Smith.wmv [Last Updated On: June 29th, 2011] [Originally Added On: June 29th, 2011]
- StemLife's First Cord Blood Stem Cell Transplant Recipient [Last Updated On: June 30th, 2011] [Originally Added On: June 30th, 2011]
- Bone marrow transplantation HD, ENG subtitles [Last Updated On: July 3rd, 2011] [Originally Added On: July 3rd, 2011]
- Cord Blood and Bone Marrow Stem Cells for Liver Failure [Last Updated On: July 4th, 2011] [Originally Added On: July 4th, 2011]
- Bone Marrow Stem Cell Applications [Last Updated On: July 4th, 2011] [Originally Added On: July 4th, 2011]
- Bone Marrow Producing Insulin [Last Updated On: July 5th, 2011] [Originally Added On: July 5th, 2011]
- Bone Marrow Stem Cell Donation [Last Updated On: July 6th, 2011] [Originally Added On: July 6th, 2011]
- Adult Stem Cells May Target and Repair Heart Attack Damage [Last Updated On: July 6th, 2011] [Originally Added On: July 6th, 2011]
- Stem cells used for medical treatment [Last Updated On: July 7th, 2011] [Originally Added On: July 7th, 2011]
- Bone marrow transplantation HD, ENG subtitles [Last Updated On: July 8th, 2011] [Originally Added On: July 8th, 2011]
- Adult Stem Cells May Target and Repair Heart Attack Damage [Last Updated On: July 8th, 2011] [Originally Added On: July 8th, 2011]
- From Surgical Repair to Stem Cell Repair: A Surgeon's Journey by Leonard Smith MD, FACS [Last Updated On: July 13th, 2011] [Originally Added On: July 13th, 2011]
- STEM CELLS - Bone Marrow Stem Cells (Balzitt).flv [Last Updated On: July 14th, 2011] [Originally Added On: July 14th, 2011]
- Spirulina DLA Naturals [Last Updated On: July 15th, 2011] [Originally Added On: July 15th, 2011]
- Spirulina DLA Naturals [Last Updated On: July 16th, 2011] [Originally Added On: July 16th, 2011]
- Insidermedicine In 60 - January 6, 2011 [Last Updated On: July 16th, 2011] [Originally Added On: July 16th, 2011]
- Christian Drapeau Talk About - Adult Stem Cells and StemEnhance./StemTech [Last Updated On: July 18th, 2011] [Originally Added On: July 18th, 2011]
- The potential of stem cells [Last Updated On: July 18th, 2011] [Originally Added On: July 18th, 2011]
- Insidermedicine In 60 - March 11, 2011 [Last Updated On: July 20th, 2011] [Originally Added On: July 20th, 2011]
- Blind Girl get's cure you need to see to believe" [Last Updated On: July 23rd, 2011] [Originally Added On: July 23rd, 2011]
- STEM CELLS - Bone Marrow Stem Cells (Balzitt).flv [Last Updated On: July 23rd, 2011] [Originally Added On: July 23rd, 2011]
- Expansion of Stem Cells by Valproic Acid [Last Updated On: July 23rd, 2011] [Originally Added On: July 23rd, 2011]
- Blind Girl get's cure you need to see to believe" [Last Updated On: July 24th, 2011] [Originally Added On: July 24th, 2011]
- LifeCell in Kalaignar Seithigal,Sun News [Last Updated On: July 26th, 2011] [Originally Added On: July 26th, 2011]
- Science behind Enhancing Adult Stem Cells for wellbeing [Last Updated On: July 27th, 2011] [Originally Added On: July 27th, 2011]
- Why treatment results vary after stem cell treatment [Last Updated On: July 27th, 2011] [Originally Added On: July 27th, 2011]
- From Surgical Repair to Stem Cell Repair: A Surgeon's Journey by Leonard Smith MD, FACS [Last Updated On: August 3rd, 2011] [Originally Added On: August 3rd, 2011]
- Insidermedicine In 60 - March 11, 2011 [Last Updated On: August 4th, 2011] [Originally Added On: August 4th, 2011]
- Why STEM-Enhance? [Last Updated On: August 10th, 2011] [Originally Added On: August 10th, 2011]
- Stem cells Transplatation in Completed Paralyze Dog. [Last Updated On: August 12th, 2011] [Originally Added On: August 12th, 2011]
- Stem cells Transplatation in Completed Paralyze Dog. [Last Updated On: August 15th, 2011] [Originally Added On: August 15th, 2011]
- Best natural skin care serum using stem cell technology [Last Updated On: August 19th, 2011] [Originally Added On: August 19th, 2011]
- "Bone Marrow Stem Cells" Donald Kohn [Last Updated On: August 29th, 2011] [Originally Added On: August 29th, 2011]
- The potential of stem cells [Last Updated On: August 31st, 2011] [Originally Added On: August 31st, 2011]
- Manatee man is paralyzed, but still plenty hopeful [Last Updated On: September 4th, 2011] [Originally Added On: September 4th, 2011]
- Stem Cells and Bone Marrow Transplants by Dipnarine Maharaj MD PhD [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- MS Cure - Introduction to stem cell bone marrow transplant in Australia [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Bone Marrow/Stem Cell Transplantation: An Introduction, With Sonali Smith, MD [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Cancer Update: Autologus Stem Cell (Bone Marrow) Transplant [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Bone Marrow Stem Cell Transplant Live from Top US Hospital [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Adult Stem Cell Mobilization from Bone Marrow (Animation) [Last Updated On: September 6th, 2011] [Originally Added On: September 6th, 2011]
- Bone Marrow / Stem Cell Transplant Recovery Fund [Last Updated On: September 7th, 2011] [Originally Added On: September 7th, 2011]
- Bone Marrow Stem Cell Expansion by HOXB4 and p21 Knock Out [Last Updated On: September 10th, 2011] [Originally Added On: September 10th, 2011]
- Adult Stem Cell Mobilization from Bone Marrow (Animation) [Last Updated On: September 10th, 2011] [Originally Added On: September 10th, 2011]
- Bone Marrow/Stem Cell Transplant [Last Updated On: September 10th, 2011] [Originally Added On: September 10th, 2011]
- Bone Marrow/Stem Cell Transplant [Last Updated On: September 11th, 2011] [Originally Added On: September 11th, 2011]
- Macular Degeneration Improved With Stem Cells [Last Updated On: September 12th, 2011] [Originally Added On: September 12th, 2011]
- Stem Cell Transplant India,Bone Marrow Transplant India,Sickle Cell Anemia Treatment India [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- Nurses Discuss Special Bonds With Bone Marrow and Stem Cell Transplant Patients [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- Becoming a Blood Stem Cell Donor [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- Bone Marrow and Stem Cell Transplant Patients Share Their Stories [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- LittleBigPlanet 2 - (WIP) Stem Cell Sackboy Bone Marrow Bugaloo [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- LittleBigPlanet 2 - Stem Cell Sackboy Quarter 4 Update (Bone Marrow Bugaloo) [Last Updated On: September 22nd, 2011] [Originally Added On: September 22nd, 2011]
- Bone Marrow Transplant Program Continues to Grow, Make a Difference [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Can Stem Cell Prolotherapy or Bone Marrow Prolotherapy help articular cartilage defects? [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Multiple Sclerosis, Stem Cells, and Hope, Part 2 [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Bone Marrow Transplant Program Continues to Grow, Make a Difference [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- How to be an Anthony Nolan blood stem cell donor [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Stem Cells extracted from bone marrow [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Calum's stem cell donation for Anthony Nolan [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Cancer Update: Autologus Stem Cell (Bone Marrow) Transplant [Last Updated On: September 23rd, 2011] [Originally Added On: September 23rd, 2011]
- Bone Marrow - Stem Cell Prolotherapy [Last Updated On: September 24th, 2011] [Originally Added On: September 24th, 2011]
- Bone Marrow Stem Cell Aspiration and Re-Injection with PRP for Osteoarthritis by Dr Adelson [Last Updated On: September 24th, 2011] [Originally Added On: September 24th, 2011]
- Mesenchymal stem cells and marrow stromal cells---2nd--- [Last Updated On: September 25th, 2011] [Originally Added On: September 25th, 2011]
- Stem Cell Injections - Bone Marrow Prolotherapy - treatment for arthritis [Last Updated On: September 25th, 2011] [Originally Added On: September 25th, 2011]
- Chat w/ Dr. Maharaj, founder of S. FL. Bone Marrow/Stem Cell Transplant Institute [Last Updated On: September 25th, 2011] [Originally Added On: September 25th, 2011]