Then it begins. Abby's extremities shake. She gasps for air.
By the point she turned three, Abby had tried about eight totally different anti-seizure medicines. None of them labored very properly. Panicked to see their daughter getting worse and worse, the Muszynskis drove three hours to Orlando to see Dr. Ngoc Minh Le, a board licensed pediatric neurologist and epileptologist.
Le informed them that possibilities of one other anti-seizure drug engaged on Abby had been tiny. He really helpful medical marijuana. The timing was proper: Simply months earlier than, Gov. Rick Scott had legalized the usage of a kind of non-euphoric hashish referred to as Charlotte's Net.
Charlotte's Net did assist Abby, however not as a lot because it had helped Charlotte. She nonetheless was having about two grand mal seizures per week, every lasting about eight to 10 minutes.
Le defined to Kim and Wealthy that Charlotte's Net has solely tiny quantities of THC, one of many psychoactive components in marijuana. Medical marijuana with greater ranges of THC was Abby's greatest hope, he informed them.
However at this level, in 2015, high-THC marijuana wasn't authorized in Florida for Abby. To get it, the Muszynskis must transfer, forsaking their family and friends, together with two older kids.
Kim thought of Colorado, the place Charlotte Figi lived. She'd checked with dad and mom of disabled kids there, and so they informed her the state had a good and environment friendly Medicaid program.
Attending to Colorado could be a problem: Abby's medical doctors stated it wasn't protected for her to fly on a business aircraft or to take an extended automotive trip throughout the nation.
The Muszynskis started their ultimate battle with Florida Medicaid -- one which would go away Kim and Abby homeless for a number of days.
Kim says that in mid-August, she began speaking to Medicaid officers about getting an air ambulance to Colorado. On September 19, Wealthy drove the household automotive out to Colorado. They deliberate for Kim to attend the closing on their home in Boynton Seashore on September 23 and go away on the air ambulance with Abby that afternoon.
Kim had emailed and spoken with varied Florida officers, and it appeared to her that the whole lot was so as. "Please give a name as we speak so we are able to finalize journey preparations!" Mary Joyce, a senior registered nurse supervisor at Youngsters's Medical Companies on the Florida Division of Well being, wrote in an e-mail to Kim on September 20.
However then a number of days handed, and there was nonetheless no ultimate approval for the transport.
Their home offered, Kim and Abby had been homeless. They moved in with Kim's greatest pal and her husband. All of Abby's tools, like her mattress with guardrails, was with Wealthy on their approach to Colorado. Kim slept with Abby on the ground.
Abby's cries at night time saved Kim's mates awake. Kim wrote emails begging Florida officers for assist. However for the primary time, she added somebody not beforehand included on the e-mail: this CNN reporter.
Three days later, she realized that the transport had been permitted.
A spokeswoman for Florida's Company for Well being Care Administration gave this assertion:
"On this case relocation providers should not coated by Medicaid, per federal Medicaid pointers. Nevertheless, because of Security Internet funds made out there by Governor Scott and the Legislature, the state supported this household by protecting the prices to offer relocation providers by way of the air ambulance of the mom's selection. Working with the household, the state organized transport as shortly as potential," wrote the spokeswoman, Mallory McManus.
On September 28, an ambulance picked up mom and daughter and introduced them to Boca Raton Airport. Abby's grandmother and aunt stated a prayer over Abby's stretcher because it was loaded on the aircraft.
As they ready to go away, Kim stated she felt like a refugee in her personal nation.
"I really feel like I am being pressured out of my residence," she stated.
However when Kim and Abby arrived in Colorado Springs, Wealthy was there to welcome them to their new residence.
'Probably the most unbelievable factor I've ever seen'
Inside a couple of weeks of arriving in Colorado, the Muszynskis felt like they'd been visited by not one however two miracles.
First, the high-THC marijuana has virtually utterly eradicated Abby's grand mal seizures. Once they left Florida, she was having about two to 4 per week, every lasting about eight to 12 minutes. In Colorado, she's had about one per week, and so they final just a few seconds: Only a drop of high-THC marijuana oil below her tongue stops the seizures virtually instantly.
"It is probably the most unbelievable factor I've ever seen," Kim stated.
She hasn't needed to go to the hospital for seizures in Colorado in any respect.
The second miracle is that up to now, Colorado Medicaid has paid for all of Abby's prescriptions and medical doctors' visits with out a downside, a far cry from their expertise in Florida. All of the hours Kim spent preventing Medicaid can now be spent along with her daughter.
Now that Abby is actually freed from grand mal seizures, she's made strides. She will be able to grasp a fork. She will be able to decide up a block and transfer it. These are small steps for a typical baby however enormous for Abby.
And an increasing number of, her dad and mom see her character come out. She smiles and giggles greater than she used to, at a balloon floating within the room or when her dad and mom blow bubbles.
Kim and Wealthy marvel if perhaps -- simply perhaps -- Abby will in the future be capable of study some very rudimentary signal language to precise what she desires. Perhaps she'll be capable of take a step with a walker and many help.
Regardless of Abby's improved well being, it has been robust on the Muszynskis to be in Colorado. Two weeks after they moved, their elder daughter, Christina, FaceTimed Kim and Wealthy from Florida to indicate off her new driver's license.
Kim rejoiced along with her daughter, however she later broke down in tears, understanding that she'd missed this vital milestone. She is aware of she'll miss different large days, like cooking Thanksgiving dinner along with her daughter and purchasing for a promenade gown, and promenade itself.
And lately Christina, who's residing along with her organic father, has been having dizzy spells and fainting. It pains Kim that she's not there to assist her.
On November eight, six weeks after the Muszynskis moved to Colorado, Florida voters permitted a poll initiative giving extra sufferers like Abby entry to hashish with greater THC ranges.
And about two months earlier than Kim and Wealthy left Florida, Medicaid began to offer them sufficient doses of Diastat, the costly anti-seizure medicine they'd needed to battle for.
Even so, the Muszynskis stated they nonetheless would have made the selection to go away Florida.
The Medicaid system there was simply too unreliable, they stated. They by no means knew when it might cease paying for Abby's medicines or her tools or her respiratory therapist or if it might kick her off this system altogether, because it did 3 times in lower than three years.
"Florida was unable to fulfill the wants of our medically fragile baby," Kim stated. "It in the end may have resulted in her demise."
Abby's not alone
There is a saying amongst Medicaid specialists: While you've seen one Medicaid program, you've got seen one Medicaid program.
That is as a result of though there are federal requirements, states have quite a lot of leeway about how they handle their applications.
Although there are not any official rankings of state Medicaid programs, specialists say there are information that may assist gauge high quality.
For instance, some state Medicaid applications pay medical doctors comparatively low quantities, which implies medical doctors usually tend to cease accepting sufferers on Medicaid.
McManus, the spokeswoman for Florida's Company for Well being Care Administration, famous that the City Institute numbers are based mostly on fee-for-service doctor charges, however the state's Medicaid program predominantly operates managed care plans. The state says it has transitioned to the managed care system over the previous few years.
"These charges don't mirror how the vast majority of Medicaid suppliers are paid," she wrote.
The small survey of pediatricians concluded that "challenges exist for kids enrolling in and accessing care by means of Florida's managed care system" and that "boundaries to getting their sufferers the prescription and over-the-counter medicines they wanted had been additionally a critical concern for pediatricians."
General, advocates for households on Medicaid say Florida is not the one state the place medical doctors and oldsters have expressed dissatisfaction, noting that households have fled different states, not simply Florida, in quest of higher Medicaid providers.
"This is not distinctive to Florida, however Florida actually has critical issues," Alker stated.
She stated her coronary heart breaks for the dad and mom who should present around-the-clock care to severely disabled kids.
"These households already face unbelievable struggles," she stated. "These households are my heroes.
"They do not want the state of Florida making it tougher for them," she added. "The state of Florida must be making it simpler."
That is the second a part of a collection on well being care refugees. Learn the primary half right here.
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