We will be adding more donars thru the week. We have met are goal, but unfortunatley this is a life long disease that could require many treatments not covered by insurance. LIZZIE will be going back to DC in a couple of weeks, and she has enough money to receive another treatment if the doctors advise depending on her symptoms.We will keep you updated :) Thanks again for all of your love and support!
LUV for LIZZIE was wonderful! Thank you all for your love and support...we could have not asked for a better turn out. Still counting money, but we made almost $15,000 in one day! I hope everyone who attended has has much fun as we did :0) Check LIZZIE out on You Tube!
Feb. 3 from 1-6pm at the Holiday Inn in Auburn. This is going to be the best benefit held ever!!! Wonderful baskets are being donated and made by the lovely community members, friends and families. We will be holding some larger raffles as well.....iPad, TV, Purses, Race Car Experience, Mirbeau Spa Treatments, Taxidermy, and more. Great food and entertainment to all! 2-4 door prizes being drawn every hour! $10/ticket to be sold at the door. The Coffee Shop at Fingerlakes Mall will also have tickets until Thursday. Hope to see everyone there!
LUV for LIZZIE will be Feb. 3 from 1-6pm at the Auburn Holiday Inn. The event is going to be awesome! We have some great basket raffles, food, 50/50 and kid's activities! Hope to see evryone there! LIZZIE is starting to feel better from her first infusion...unfortunately at anytime, she could get another flare up and require more. This is a life long disease and will require alot of care throughout her years. Insurance does not pay for the treatment at this time, and MAY start to pay in 2014. Please help- every dollar counts :)
Lizzie taught herself " the trick of the NINES" tonight while working on her math homework.... she said it was " so cool and awesome!!!" She did 3 pages of math homework and enjoyed it !! I am seeing glimpses of my little girl sparkling through....
Lizzie will need support for the years to come! Please continue to help support the the O'Hara family!
Mama Bear: Spent today muddling through the upcoming issues that need to be dealt with... I am so happy Lizzie has gotten her IVIG. I wish I could say everything was all better now... but I see a long road and many battles ahead of us. Researching to find a good immunologist , possibly a different neurologist , attempting to create an acceptable educational plan for Lizzie due to she will be out of school for an extended time. Adjusting her medications accordingly....
Hang in there Beth! We are all here for you and your family :)
Report from DC:
Lizzie felt okay last night.... headache , achy body , low grade temp... we ordered dinner in and went to bed early... she woke up this morning not feeling very well. Her legs are again numb and weak and she can barely walk short distances... she really wanted to see THE WHITE HOUSE while she was here. She is too weak to take the train into the city. So we are braving the traffic...... some how we will get her to see it. She is sleeping in the backseat now.
If anyone wants LUV for LIZZIE T -shirts-please post on the Lizzie's P.A.N.D.A.S page :)
Also, tickets for the benefit are on sale at the Coffee Shop at Fingerlakes Mall!
This was the week we were waiting for-LIZZIE had her final infusion completed today after being down in DC since Tuesday..... she is feeling okay now. Going to just keep trying to stay ahead of the side effects by pretreating with meds.... will keep updating. Thank you to everyone that has kept Lizzie in your thoughts and prayers and made this treatment possible. ♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
The O'Hara's leave Monday for Washington D.C. for Lizzie's treatment. We are so excited for her to get the treatment she needs so badly, to help her return to herself! Please help this family with the costs of the trip and treatment not covered by insurance! Benefit tickets are being sold by numerous people throughout the city and the Coffee Shop at the Fingerlakes Mall. LUV for LIZZIE benefit Feb. 3 1-6pm. Bracelets are being sold for $3 each.
LIZZIE is in The Citizen Today!
AUBURN | It started with a sore throat.
It was July, and Lizzie O'Hara was suffering from what appeared to be a normal case of strep. A doctor prescribed her a round of antibiotics, and Lizzie's symptoms subsided.
For the next two months, the bubbly 8-year-old Auburn girl continued doing the activities she loved best: playing soccer, making jewelry, singing and "” come September "” going to school.
But late in October, that all changed.
Beth O'Hara, Lizzie's mother, said her daughter started showcasing a range of psychological symptoms on Tuesday, Oct. 23. Without warning, Lizzie was suddenly incredibly anxious, her mind plagued by an endless parade of terrible, unstoppable thoughts.
After watching her previously outgoing daughter suffer two days of inexplicable mood swings, separation anxiety and an inability to concentrate, O'Hara said she knew something was wrong.
"It was a whirlwind," she said. "It was like a tornado went through her."
O'Hara took Lizzie to her pediatrician, who immediately diagnosed what sparked Lizzie's sudden onset of psychiatric symptoms: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, better known as PANDAS.
According to the National Institute of Mental Health, PANDAS is an autoimmune disorder where children suddenly suffer from obsessive-compulsive disorder and/or tic disorders following strep infections like strep throat.
The institute states that PANDAS comes after an untreated strep infection causes the immune system to release antibodies that attack the child's brain. The basal ganglia "” an area of the brain that controls movement and motor skills "” is particularly targeted, leading to OCD, tics and a large list of other neuropsychiatric symptoms.
O'Hara, a registered nurse, said she and many of her fellow colleagues at Auburn Community Hospital had never come across PANDAS.
"At first, I didn't even know about it," she said. "Nobody I talked to had heard of that."
Although a strep infection and psychiatric disorders seemed quite unrelated, O'Hara said the research she conducted after receiving Lizzie's diagnosis "” particularly reading about other parents' PANDAS stories "” resonated perfectly with her daughter's experience.
"They go from being fine to this whirlwind of symptoms," O'Hara explained of children afflicted by PANDAS.
According to the NIMH's website, children suffering from the autoimmune disorder often experience tics, irritability, an inability to concentrate, developmental regression and trouble sleeping, in addition to OCD.
When asked to describe what PANDAS is like, Lizzie repeatedly uses one word: chaos.
"I've been going through a lot," the third-grader said. "I can't control my thoughts."
Lizzie said she doesn't like to go to school anymore, explaining that she feels like everyone now treats her differently.
"It kind of hurts my feelings, because I have sensitive feelings," she said. "Nobody understands. I never feel comfortable anywhere."
Beth O'Hara said simply getting Lizzie to attend Herman Avenue Elementary School has been a struggle. She said Lizzie now struggles academically "” something new for the outgoing, bright girl.
"She's always liked school," the mother of two said. "She's never missed school."
Bob O'Hara, Lizzie's father, said his daughter used to be happy to sit down with her family for meals, and usually completed chores without complaint.
Now, he said, his daughter "freaks out" when it's time for her to go to bed, not wanting to be alone in her room. He said she can't sit still at the dinner table, and constantly flips around in her chair.
"It's like a totally different child," Bob said. "It's like I'm living with an 18-year-old rebel child."
Beth agreed with her husband, smiling sadly.
"This kind of behavior," she said, "is not how my 8-year-old child used to act."
Although PANDAS isn't a well-known disorder, scientists have discovered multiple ways to treat the autoimmune condition.
According to the institute, doctors usually attempt to treat PANDAS by prescribing the child antibiotics to eradicate the underlying strep infection. And in many cases, this line of treatment stops the child's neuropsychiatric symptoms.
In Lizzie's case, antibiotics have not worked. So, the O'Haras' next option is to try one of two immune-based therapies: either plasmapheresis or intravenous immunoglobulin. Plasmapheresis entails the removal, treatment and return of blood plasma from a patient's blood circulation, while IVIG is a type of therapy where patients are given a blood product intravenously.
This week, the O'Haras are set to travel to Washington, D.C., where Lizzie will see a pediatric neurologist and receive either IVIG or plasmapheresis.
Beth said no doctors in New York treat PANDAS, forcing her family to travel to the country's capital. And although the treatments are far from experimental, she said, insurance does not cover the treatments for children.
That means the at-least-$20,000 treatment will have to come out of the family's pockets.
Luckily, the O'Haras have good friends.
Beth O'Hara said both ACH and Nucor Steel, her husband's employer, have been more than understanding about what Lizzie is going through. She said some of her fellow nurses have donated hours to allow her to be with her daughter, and workers at both Nucor and ACH have organized a benefit to help raise money to cover the expensive PANDAS treatment.
"We're very thankful for our community," O'Hara said, "For both of our employers "” Auburn Community Hospital and our Nucor family."
In the meantime, she said her family will cross their fingers in hopes that the expensive treatment works, that Lizzie can say goodbye to chaos.
Seated on a couch in her Auburn home's living room, Beth O'Hara pulled her dog onto her lap and watched her daughter navigate her iPod.
When she looks at Lizzie, O'Hara sees her daughter as she is without PANDAS: a Girl Scout who loves singing in public and always wears a bright flower in her hair.
"Lizzie is very outgoing, very confident, very energetic," O'Hara said. "And its changed things for her. This is pretty life-altering for her."
O'Hara said she hopes the treatments stamp out Lizzie's OCD and allow her young daughter to live her life unimpeded by torturous thoughts and crippling anxiety.
"That's the goal of this treatment: to get her back to her baseline, to make her more comfortable," O'Hara said. "It's like a puzzle that the doctors are still putting together."
At first, O'Hara said she wasn't sure she wanted to make her family's story public. But when she realized how unknown PANDAS is, she said she knew how important it was to speak.
"We couldn't even wrap our mind around it. That's when we felt that we wanted to let people know about it," she said. "If we can make people aware this and doctors aware of this, then children can get treated."
As for Lizzie, her wish is simple.
"I hope," she said, speaking quietly, "that my life will get better."
PLEASE HELP THIS LITTLE GIRL! EVERY DOLLAR HELPS!
I HAVE POSTERS AND BENEFIT TICKETS IF ANYONE NEEDS THEM- PLEASE CONTACT ME :)
PANDAS can present with severe and debilitating symptoms as in Sammy's case, or it can be more subtle and easily misdiagnosed, especially since most doctors are unfamiliar with the disorder. Tics, OCD tendencies, rigid/inflexible thinking, behavioral changes, anxiety, from mild to severe could be caused by an autoimmune reaction to strep antibodies. Watch his story.....
2121 W. Genesee St., Auburn, NY.
â™¥ SUPPORT LIZZIE â™¥
in fighting PANDAS
New Years Eve - Open Gym/Party"¦
**December 31st 6-10 pm**
Open gym, pizza, drinks, music, games"¦
Drop the kids off and go enjoy yourself while we watch the kids"¦
$20/child and $15/each additional sibling. Must RSVP.
All proceeds go to support Lizzie!!
**If you can't attend please donate..no amount is too small**All will be greatly appreciated!!
LUV for LIZZIE Benefit Feb 3rd, 2013 at Auburn Holiday Inn from 1-6 pm. 600 tickets for sale@ $ 10 each. This will get you into the benefit filled with fun, food, door prizes, 50/50, kid's activities and more! If we sell all tickets- that is $6000! We need to get this under control for Lizzie's sake :)
Lizzie 's date got moved up by one more day to see the doctor! We have been waiting a long time for this. The new appointment is Jan 9 :) Tickets for benefit will be avaiable by Friday night!! We have raised so much already- let's keep it up! Tis the season for giving!
Beth received wonderful news today!!!! Lizzie has her first MD appointment Jan 10 scheduled. Please help us raise as much as possible- so far we have rasied enough for the MD office visit. Let's keep going, so the O'Hara family can have a wonderful Christmas. Thanks to everyone for showing such wonderful support!
Lizzie is a student at Herman Elementary. Lizzie was recently diagnosed with PANDAS, a rare neurological disorder. Her treatment is needed right away, but insurance will not pay the huge expense of IVG infusions. Please spread the word to everyone you know! Any amount will help. Thank you everyone again, for all of your love and support.The O'Hara family is speechless at all of the efforts everyone is making. Lizzie is concentrating on the benefit and even making bracelets to sell:) - which helps keep her mind off other things. Flyers and tickets for the benefit will be available right after the holidays. Again, the benefit will be in the grand ball room at the Holiday Inn Feb. 3 from 1-6 pm.
Lizzie blood work is better, but her symptoms are not following in that direction- as much as we would like to see. I have ordered T-shirts and bracelets (for kids and adults) to hopefully be in by the end of the week. I will let everyone know when they are ready for sale. Feb 3rd from 1-6pm a benefit will be held at the Auburn Holiday Inn to raise money for Lizzie. Kids activities, music, food, raffles, and more to come!!!
Lizzie is your average smiling little eight year old girl. One day, PANDAS became a part of her life. This formerly vibrant child is experiencing the ravaging of her brain with every passing moment. PANDAS, in brief, is an auto-immune disorder caused by a strep infection. Patients suffer a range of neurological symptoms that cause loved ones to describe them as a totally different child. She has began treatment in Washington, DC with a pediatric neurologist. Her treatment is not covered by any medical insurance. The O'Hara family agonize over the loss of the little girl they've known to love, and how they will afford the cost of the only treatment that has demonstrated positive effects. Please help now! A benefit will be held in Lizzie's honor Feb. 3rd at the Auburn Holiday Inn from 1-6pm. $10 a ticket to include door prizes,basket raffles, food, music, kid's activities, fun, cash bar and more!
Campaign Not Ready
There's an issue with this Campaign Organizer's account.
Our team has contacted them with the solution, it's a simple fix!
Please ask them to sign in to GoFundMe and check their account.