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Twins need $60,000 more for brain surgery as KanCare, ACA fall through

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Contributed Photo

Vic Tranckino and Karla Holton with their children, Kylie Tranckino, 6, and Lance and Blake Tranckino, who recently underwent reconstructive brain surgery.

— Blake and Lance Tranckino’s birthday, April 30, is approaching quickly, and a required reconstructive brain surgery must happen before they turn a year old.

Their father, Vic Tranckino, said doctors recommend the surgery be done between 10 months to one year after birth. At 2 months old, the twins were diagnosed with craniosynostosis, a birth defect in which joints between bones in a baby’s skull close prematurely. That prevents the child’s brain from growing properly. The fused bones must be separated in surgery.

The family has scheduled a surgery for April 25, but doctors and the family worry the date is too close to the twins’ birthday. Tranckino said they are working with doctors to move the date up to April 2.

“They’re right at 10 months right now,” Tranckino said. “We’d like to bump the date up.”

On Saturday, a fundraiser for Blake and Lance in Tonganoxie raised more than $10,000 for the Basehor twins and adds to the family’s new goal of raising $80,000 to be able to afford the surgery.

“It was awesome,” Tranckino said of the event.

Insurance companies have denied the family's claims for aid, Tranckino said, but a hospital in Dallas is working with them to lower the cost of the operation. The family’s previous goal was to raise $100,000.

The event at the Leavenworth County Fairgrounds in Tonganoxie, organized by Travis Wilson, included a swap meet and car corral while arts and crafts, business and food vendors sold items. The Basehor VFW Post 11499 served food at the event and raised $500. Post Commander Phil Jenkins siad the post is donating the entire $500 to the family.

“We were asked several week ago to help out, and we absolutely wanted to,” Jenkins said.

All of the proceeds will help with Blake and Lance’s medical bills. The specific surgery is not covered under the family’s plan through KanCare. Blake and Lance’s parents are Tranckino and Karla Holton of Basehor.

The brothers are each in the 80th percentile in size and height, their mother told The Tonganoxie Mirror in January, and were otherwise healthy when they were born nearly one year ago. But in order to keep growing at a normal rate, the twins need the reconstructive surgery.

“It’s not elective,” Holton explained. “Not cosmetic. It’s mandatory.”

The couple joined KanCare, the program through which the state administers Medicaid, last July. Holton worked as a nurse at an orthopedics office, but opted to become a stay-at-home mother to care for her children, which left the family without insurance coverage through her job.

Children’s Mercy Hospital and Kansas University Hospital provide a form of the surgery, Holton explained, but the Dallas specialist does the procedure twice a day. Surgery in Texas would be more invasive, which Holton said could better detect any other health issues beneath the skull. KanCare would only cover procedures at Children’s Mercy or KU.

Legislators in January urged the family to explore other insurance options through the Affordable Care Act, but those efforts have been denied, according to Tranckino.

Online donations can be made at youcaring.com/BLAKELANCE or at any First State Bank and Trust location. The website says the family has raised about $7,000, excluding the money raised this weekend in Tonganoxie.

Comments

Sean Passmore 5 months, 2 weeks ago

So family chose to not have insurance. No one can be turned down for health insurance through the marketplace.

"Legislators in January urged the family to explore other insurance options through the Affordable Care Act, but Tranckino said all of their claims have been denied, “100 percent.”"

That's a confusing statement. Of course claims are going to be denied if you don't have insurance.

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MerriAnnie Smith 5 months, 2 weeks ago

Did I misunderstand? I thought the mother chose to be a stay at home mother and THEN the babies were found to have this problem.

Also it says their insurance companies refused to pay for this.

They were turned down by ACA - likely because they qualify for Medicaid. I know several other people who were unable to get insurance through ACA because ACA, as it was created, would not cover Medicaid eligible people since every state was going to be paid by the US government to expand Medicaid to those people BUT our governor and legislators turned down the expansion.

If that is the case I hope this family is Republican. I'd hate to see a Democrat get punished for this Republican decision.

As for the children, it's true that this is not an elective procedure. I know a child who had this problem. Imagine the skull only allowing brain expansion as it grows up to a limit and then the brain has to push itself in odd ways as it grows.

Long before ACA, Florida was footing the bill for this kind of surgery AND taking care of the child's needs for life after that.

Why doesn't Kansas do that? This disease is something that happens at the time of birth. It's for newborns. They can't possibly be allowed to suffer and die, no matter what choices the parents have made.

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Lawrence Morgan 5 months, 2 weeks ago

I completely agree. I am concerned about the children's health, but why didn't the family have insurance coverage, which was available. Please tell us more about this. I can't believe that the parents wouldn't want insurance if it were available at the time.

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MerriAnnie Smith 5 months, 2 weeks ago

They don't qualify for ACA because Kansas was supposed to expand Medicaid in this situation and our governor and legislators refused to allow people like these infants to have expanded Medicaid.

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Betty Bartholomew 5 months, 2 weeks ago

As a mother, I understand wanting the very best for your child. But if surgery can be covered through KanCare at Children's Mercy, you're $70k away from a goal you need to meet by April 2 or 25, and it's March 18, shouldn't you strongly be considering Children's Mercy? There is wanting the very best for your child and doing what is best for your child. I'm not sure holding out for the specialist in Texas is doing what is best for your child at this point.

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MerriAnnie Smith 5 months, 2 weeks ago

I agree.

Hopefully they will have time to change their minds if they don't raise the money.

The child I know who had the surgery in Florida had his surgery in a local hospital there. This mother is a nurse and might have better information about the quality at Children's Mercy here than we do, though.

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MerriAnnie Smith 5 months, 2 weeks ago

The way this article is written, it seems to blame ACA for "falling through" but that is incorrect.

Put the blame where it lies.

ACA was created to cover this situation in that it refers people whose income is low enough to Medicaid; and then ACA stipulates that the states will be paid to expand Medicaid to cover these people.

But Sam Brownback and our Republican legislature turned the money down from the feds for the expansion of Medicaid. It would have cost us nothing for years and then only pennies on the dollar in the future. But Brownback hates Obama and had to throw his weight around and be ugly about the poor needing help - even if it was free for the state.

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