Annalise Lujan started collecting pop-tabs for the Ronald McDonald House at the age of 4.
She wanted to be a doctor someday, or maybe a gymnast. She definitely wanted to help people.
“She
is just a giving soul and loves to help others,” says Maryann
Estrada-Lujan, Annalise’s mother.
“She wanted to be a doctor for the Ronald McDonald House and work for free. She has just always been a giving person.”
“She wanted to be a doctor for the Ronald McDonald House and work for free. She has just always been a giving person.”
On
April 2, Annalise, now 12, vomited before a competition with her
Tumbleweeds Gymnastics team. She insisted on competing, but threw up
again during the third event, her mother says. She said she felt better
after that, but during the fourth and final event, she couldn’t walk.
Her parents took her to the hospital.
On April 3, she had her first seizure.
Annalise
was hospitalized at Banner-University Medical Center Tucson on April 4
and soon put into a medically-induced coma to prevent further brain
damage, Estrada-Lujan says.
She turned 12 on April 18, and on April 21 was taken by a medical helicopter to Phoenix Children’s Hospital.
There,
the Robins Elementary School student was diagnosed with febrile
infection-related epilepsy syndrome, or FIRES, a rare brain disorder
that causes continuous seizures and eventually death or some level of
brain injury in previously healthy school-aged kids. Anti-epileptic
drugs typically don’t help.
The
cause of the syndrome is a mystery. Some believe it is initiated by an
infection affecting the immune system or a fever triggering a genetic
response in the body. But those are just two prevailing opinions, says
Dr. Eric Marsh, assistant professor of neurology and pediatrics at the
University of Pennsylvania’s Perelman School of Medicine and the
Children’s Hospital of Philadelphia. Marsh has been treating the few
patients who have come down with the rare form of epilepsy since 2000.
But there is hope for Annalise, because on May 8, she woke up.
Pop tab premonitions
The
Arizona Daily Star first wrote about Annalise in 2010 when her uncle’s
pop-tab collection inspired the 4-year-old to start her own. About a
year later, Annalise appeared in the paper again after deciding to grow
out her hair for Locks of Love.
“I want them to feel better,” she told the Star in 2010 when asked about her pop-tab collection.
That
first year, she donated about 70,000 pop-tabs to the Ronald McDonald
House in Tucson. She has continued to collect the tabs and donate them
each year on her birthday, averaging about 60 pounds of pop-tabs each
year, Estrada-Lujan estimates.
“She
got a ribbon and put a pop-tab on it and wore it as a bracelet, and
people would ask, ‘Why are you wearing that?’ and she would say, ‘I’m
collecting it for sick kids at the Ronald McDonald House,’”
Estrada-Lujan says. “Every year for her birthday, she donates her tabs.”
The
nonprofit’s website says that “1,267 pop-tabs make one pound,” and “150
pounds helps one family stay the night at the house.”
Last
year, the Ronald McDonald House in Tucson made about $4,000 from
recycling pop-tabs, says Kate Maguire Jensen, the president and CEO of
Ronald McDonald House Charities of Southern Arizona.
And even in Phoenix, Annalise’s collection continued.
“In
ICU they heard her story so the nurses started a little jar and are
collecting,” Estrada-Lujan says.
“She is still collecting for the Ronald McDonald House and she has been asleep.”
“She is still collecting for the Ronald McDonald House and she has been asleep.”
That is bittersweet for the family, which hasn’t been able to make use of the house in Phoenix.
Annalise
tested positive for MRSA, an infection that is caused by staph bacteria
and is resistant to most antibiotics, according to the Mayo Clinic.
Because
many of the kids who do stay at the Ronald McDonald Houses have
vulnerable immune systems, the nonprofit “has a very strict policy
relating to infectious diseases to ensure, as best we can, the health,
welfare, safety and comfort of the families staying at the Ronald
McDonald House,” writes Nancy Roach, the executive director of Ronald
McDonald Charities of Phoenix in a prepared statement.
“While
we never want to turn anyone away, there are, unfortunately, times when
we have to make very difficult decisions like this one.”
Estrada-Lujan
has been sleeping on the couch in her daughter’s room, and her husband
has been commuting every few days while their 13-year-old son finishes
school.
“Who knew she would be advocating for them, and now we’re going to need to use those services?” Estrada-Lujan says.
Intractable epilepsy
Annalise went to the hospital the first time after that gymnastics competition in early April.
“She
competed with us all season and when she got to state this year is when
she got sick,” says Courtney Jolly, Annalise’s coach and owner of
Tumbleweeds Gymnastics. “We all thought she had a stomach bug because
she threw up, and that’s when she went to the hospital.”
Banner
confirmed the stomach virus theory and sent Annalise home with some
medication. After the first seizure, the hospital attributed it to
dehydration, hooked Annalise up to an IV and sent her home with
additional medication, Estrada-Lujan says.
When Annalise returned to the hospital after the second seizure, the doctors kept her.
“She
had continuous seizures, and they weren’t able to break status even
after several attempts with medications,” Estrada-Lujan says. “They put
her into a medically-induced coma to save her brain from further
permanent damage.”
At Phoenix
Children’s, the family met Dr. Angus Wilfong, the division chief of
pediatric neurology at Barrow Neurological Institute at Phoenix
Children’s, and learned about FIRES.
Estrada-Lujan spent the night learning everything she could about the syndrome.
That’s
where she first discovered the drug cannabidiol, or CBD, a strain of
marijuana that has been increasingly studied as a treatment for FIRES
and other intractable, or hard-to-treat, forms of epilepsy.
Medicinal marijuana
Last
year, Wilfong (who was working at Texas Children’s Hospital until late
last year) and seven other doctors published a study on the use of
cannabidiol in treating FIRES. In the study, they found that the
Schedule 1 drug reduced the frequency and duration of seizures and
allowed the patients to be weaned from other medications.
“This
stems from the whole medicinal marijuana craze that is out there,” says
Dr. Eric Marsh, one of the doctors who authored the study. “There are
lots of anecdotes that were on social media that suggested that
marijuana high in cannabidiol and very low in THC could be
anti-epileptic.”
The liquid CBD oil is low in THC, the compound in the cannabis plant that produces the high.
When
Estrada-Lujan learned about it, she began advocating for its use in
Annalise’s treatment. Nothing else seemed to be working.
“I
wanted to know if my daughter was eligible,” she says. “Dr. Wilfong was
new to Arizona and didn’t have his license to use it here, so he got
with his partner, Dr. John Kerrigan, who had his license for this
Schedule 1 drug.”
Estrada-Lujan
hopes that successful treatment of the syndrome with CBD oil will help
other families like theirs who didn’t know about the option Annalise is
trailblazing.
The process to use the drug requires approval from federal agencies such as Drug Enforcement Administration, Marsh says.
During that process, Annalise remained in a coma.
There are still a lot of questions surrounding the use of cannabidiol as a treatment for FIRES.
Because
there isn’t really an option to give an ill child a placebo, it’s hard
to know whether the success of patients was a result of cannabidiol,
timing or some other combination of factors, Marsh says.
Questions remain about dosage, when to use it and defining the ideal patient.
Also
unknown are the effects cannabidiol use might have on the developing
brains of these young patients. Using medicinal marijuana with THC over
time probably would lower the IQ of a young patient, Marsh says, but not
enough data exist on the impact of cannabidiol.
“Some
parents are desperate, and they are willing to try anything, but it is
not a miracle, and you have to be careful,” Marsh says.
On Saturday, May 6, Annalise was given a dose of Epidiolex, the same liquid CBD extract used in the study.
After three treatments of CBD oil, Annalise stopped seizing continuously, Estrada-Lujan says.
“I was there when she woke up,” she says. “It was amazing. It was truly amazing to see eyes again.”
Rehab road
Annalise is now awake and breathing on her own. She can follow basic commands.
“Open your mouth. Squeeze my finger. Stick out your tongue,” Estrada-Lujan says.
To
get off the ventilator, Annalise had to prove she could breathe
independently by successfully “sprinting,” or breathing without a
ventilator for designated amounts of time.
At every stage, her community has rallied around her.
“I
told her coach that she would be sprinting to prove she had strong
enough lungs to get off the ventilator, so her teammates were all
sprinting at Tumbleweeds,” Estrada-Lujan says. “They were sprinting
while she was sprinting.”
The Tumbleweeds team has made cards for Annalise and sent a leotard to hang in her room, Tumbleweeds coach Jolly says.
“She’s
very energetic and always has a smile on her face,” Jolly adds.” She’s
caring for the other girls and constantly supportive of them. She’s just
an all-around great kid.”
As
Annalise begins therapy, the process will uncover the extent of the
syndrome’s effect on her brain. She’s still having a few seizures for 8
to 10 seconds, but only one or two in the last week. They’re not
continuous like before, her mom says.
“We
don’t know how much brain damage has been done,” Estrada-Lujan says.
“She needs speech therapy. She has tried to speak, and you can make out a
few things. We don’t know what her motor skills are and the memory loss
she has had.”
Her ability to
speak is limited, comparable to that of a 3- or 4-year-old, her mom
says. It takes her time to process information.
Two
GoFundMe pages currently tell Annalise’s story. One, set up by
Estrada-Lujan’s aunt, Margaret Geittmann, has a goal of $100,000 to help
with medical expenses. That campaign
had raised more than $15,000 as of Friday. The second campaign seeks to
cover the cost of Annalise’s therapy, with a goal of $5,000. That campaign had raised almost $4,000 by Friday.
Estrada-Lujan hopes that Annalise can complete some of her therapy at Tumbleweeds.
“All
of our physicians and staff are happy to see she is doing well and are
encouraged by the progress she has made thus far,” writes Kerrigan, the
director of the pediatric epilepsy program and clinical neurophysiology
laboratory at the Barrow Neurological Institute at Phoenix Children’s,
in a prepared statement.
“While
cannabidiol (CBD) is potentially one of the treatment avenues that has
played a role in her progression, we can’t say for certain it’s what led
us to this point, as we have been actively caring for and providing
various treatments throughout her stay at Phoenix Children’s. Controlled
scientific trials of CBD are currently underway, which will hopefully
clarify its role as a possible treatment for children with severe forms
of epilepsy.”
Annalise is
making progress and working hard, but the road ahead will be a long one.
Estrada-Lujan hopes they will be discharged in the next few weeks. Then
they can come home to Tucson.
“To
me it was so devastating because she is such a beautiful talented and
kind little girl,” says Geittmann, a registered nurse who lives in
Illinois. “She has done so much for others, and so it’s time that we
come together and do this for her.”
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