StemCell Therapy

VIRGINIA BEACH, Va. (WAVY) There is a continuing fight in the Virginia GeneralAssemblyto save the lives of children impacted by a deadly disease.

In December, the state rejected efforts to provide funding for the early screeningof Krabbe disease, a rareneurological condition. According to the Mayo Clinic, it impacts one in 100,000 children.Critics say thats why a Virginia Department of Health Screening Advisory Committee rejected it.

However, Delegate Jason Miyares (R), who represents House District 82, says he will not be denied.

This was a commitment I made when this first came to my attention, and I am a man of my word, and Im a big believer in let your yes be yes,your nois no. I promised them I would continue this fight until it gets across the finish line. Hopefully this time, with a budget amendment.

It was a promise made by Del. Miyares to the parents of 2 year old Nikola.

10 On Your Side has been following Nikolas journey since he was less than a year old.

In a recent visit his father, DraganGrujicic,was using a suction machine to clear Nikolas lungs. If I dont dothis,he could get pneumonia and kill him,Grujicicsaid.

There is no cure for Krabbe disease,but if detected just after birthand within amonth, andwith a blood stem-cell transplant, life can be extended for years.It has to be detected in newbornscreeningimmediatelyafter birth. If it is not detected early, Krabbe will kill by age five.

Every day, all day long, her care and medical needs are front and center, said Rachel Lebow. Her 3-year-old daughter Mila has Krabbe disease.

Kasey Feldts son Dawson died in November. We know he is in a better place, having funin heaven,and thatgives us peace.

Dawson was 15 months old.

Fourdays after Dawsons death, Kasey testified beforethe VirginiaDepartment of Healths Newborn Screening Advisory Committee that ended uprejecting newbornscreening for Krabbe disease.

Doctors actually voted against it.

Im so confused why the doctors said no, Kasey said.

Lebow was stunned by the defeat. Tobring in other doctors who opposed it and the things they said, just didnt make sense. And I dont know the reason behind it.

During 10 On Your Sides interview with Lebow, her daughter Mila had a mild seizure.Sadly,this is Milas life until she dies.

If Mila hadbeenscreenedat birth,and been able to receive stem-cell transplant and everything had gone well with that,Mila would not have all these complications, said Lebow.

Which brings us back to Del. Miyares who sponsored the Krabbe Screening Bill that wasrejected inRichmond.I wasdisappointed last year. Governor Northamopposed my legislation, and we allwere disappointedtheDepartment ofHealthwasnt willing to add this to theirearly screeninglist, he said.

Christen Crews is a Nurse Supervisor for the Virginia Newborn Screening Program at the Virginia Department of Health.

She confirmed at birth the stateexperts alreadythink its too late tobasicallysave the children.

Duke Universitys Dr.JoanneKurtzbergsays these Virginiaexperts are wrong,By doing thetransplant it slows down progression. Itprevents early problems from development, particularly those in the brain.

Dr.Kurtzbergperforms the Krabbe stem cell transplants and says 22 of her patients are living normal lives. The oldest is now 24 years old.

The early screening is already approved in eight other states.

It isa drop in the bucket in a multi-billion-dollarbudget, said Del. Miyares about the early screening funding.

Del. Miyares is determined to get that funding. Hehas submitted an amendment to the State Budget for newborn Krabbescreeningwhich,as he said,isa drop in the bucket to save newborn lives.

Last year, Del. Miyares used a budget bill to fight this battle, but during the shortened legislative session this year, hisstrategy is a budget amendment.

The estimated startup costs for screeningare$2.88million,with estimatedannual costs expected to cost less, about $2.56 million in a $67billion a year state budget.The cost for Krabbe screeningbreaks down to 1/10 of onepercent.

You find out, wow, the parents think had Ijust had this screening at birth I could have had this massive early intervention that would have not given my baby a death sentence, said Del. Miyares.

She (Mila) may be able towalk and run and dance and jump and laugh andsmile, said Lebow.

Del. Miyares sums it up this way. We are saving lives.Its worth it!I think thisiscritical in this debate and this discussion.Without a doubt, he believes it would be money well spent.

Here is the original post:
Delegate takes on Virginia Department of Health and the governor to get funds for Krabbe disease early screening - WAVY.com

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