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This fundraiser ended on 11/30/11

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I am here to raise money for the Williams family while they fight everyday for their children and their illnesses..

I am creating this page for the Williams family because they hold such a special place in my heart. Krista, Leah, Brandon, Elijah and Noah Williams are 5 of the strongest people and the sweetest people I have ever met. Their lives are not like everyday people's lives. Why? Here's why. As an infant little Leah was diagnosed with Infantile Spasms Syndrome, or West Syndrome, and Cortical Visual Impairment. Leah also just had a feeding tube put in.. Here is some of her story:

KYLERTOWN - Krista Williams trusted her "mother's instinct" when she sensed something was wrong with her infant daughter, Leah. After many trips to the doctor, Leah, now 5, was diagnosed with Infantile Spasms Syndrome, or West Syndrome, and Cortical Visual Impairment.
Williams first noticed something was wrong when Leah was a baby. It was Labor Day and Leah's great-grandmother had come to visit.
"We noticed her eyes rolled when her great-grandmother talked to her," Williams said. She was working at Clearfield Center for Children's Care with Dr. Jennifer Graham at the time and took Leah there the next day. The doctor consulted with another pediatrician and the two recognized that something was wrong. They sent Krista and her husband, Brandon, to see a pediatric ophthalmologist, Dr. Thomas Wilson, at Geisinger Health System in Danville the following day.
The doctor there suggested that Leah had a "little delayed maturation," Williams said, "but we just knew something was not right."
The couple had two older healthy children, Elijah and Noah, now 11 and 7, and just had a feeling something was "off" with Leah. They were referred to a neurodevelopmental pediatrician, Dr. Scott Myers, at Geisinger. Leah had regressed from an "almost army crawl" to nothing, her mother said. At her six-month checkup, the doctor thought she was completely blind.
While doctors agreed that something was wrong, but couldn't offer solutions, Williams turned to the Internet for answers. She found information on Cortical Visual Impairment and took it to her doctor. She was referred to Dr. Marla Moon, a low vision specialist in State College, who diagnosed Leah with CVI. The condition, she noted, is actually a processing issue with the brain, not the eyes.
"It's the way the brain puts it back out that's the problem," she said.
Leah had also started experiencing seizures.
"One night, she did this thing where she'd bring all her limbs inward," Williams said, noting that the behaviors were in a rhythmic pattern, every eight seconds. "I realized she was having seizures."
Williams described the actions as a "startle reflex," but nothing was startling her. Initially, the behaviors were inward, but Leah then started to fling her limbs outward.
She took Leah to Dr. Graham's office the next day. After researching the Internet, she found West Syndrome, or Infantile Spasms Syndrome, a specific type of epilepsy seen in infancy.
"It was like a light bulb went on," Williams said. The doctors hadn't been able to figure out Leah's problem, but Williams hadn't given up.
Graham scheduled an appointment with a neurologist, Dr. Jill Gotoff, at Geisinger and Leah underwent a battery of tests. Williams explained that infantile spasms are characterized by a certain pattern of chaotic brain waves shown on an electroencephalography, but sometimes kids with infantile spasms don't show the pattern right away. Doctors performed both an EEG and a visual evoked potential test on Leah.
"When the tech returned to do a hearing test, we knew something was up," Williams said. "Then the doctor told us it was Infantile Spasms Syndrome."
Leah had practically regressed to a newborn and the Williamses knew that was a bad sign. But after reading about Infantile Spasms, the family was "kind of ready" for the diagnosis.
"We were just relieved to know what was going on so we could try to help her," Williams said.
Leah spent three days in the Janet Weis Children's Hospital where she started a steroid therapy of adrenocorticotropic hormone shots. Her parents learned how to administer the shots, which she needed for six weeks. The shots started at high dose and gradually decreased. Leah's spasms had stopped completely and her vision started to improve.
"She doesn't look blind anymore," Williams said, "but she still has problems."
Once the shots stopped, Leah stopped drinking and became malnourished. She required a feeding tube, which her parents learned to put in. Leah also visited the Penn State Milton Hershey Feeding Clinic for four years to re-learn how to eat and drink. She was discharged in March because she is where she should be developmentally and should be able to orally take in enough nutrients to maintain her weight.
At 15 months, Leah could sit up. Doctors were amazed. She had been seizing continuously for 18 hours a day.
"The doctor cried when she saw her walking," Williams said. "Now, she's a big girl."
Williams said her daughter will always have issues, but the family is "just happy where she is." Doctors have said she'll always have to live with her parents, but her brothers might have something to say about that. Williams said she overheard Elijah and Noah arguing about which one would take care of Leah. Both of the boys want to be able to help their sister.
"She'll always have someone to take care of her," Williams said.
Compared to other kids with her condition, Leah is in the middle range. Her progression is still delayed in multiple phases, she doesn't speak much, and she still wears diapers. She started to have seizures again in the spring.
"She's having complex partial seizures now, but she's on medication. We're trying to get it under control," her mother said.
"There's still no reasoning why it happened to her," Williams said. Doctors think it could be genetic, but they don't know how to test. Leah is currently part of various genetic testing studies. She also underwent a Positrom Emission Tomography scan in Detroit where Dr. Harry Chugani detected an area of dysplasia on the cortical part of Leah's brain. But, doctors still aren't sure of the cause.
Infantile Spasms Syndrome Awareness Week began a few years ago to bring attention to the condition. Williams said a lot of kids get misdiagnosed at first, typically with reflux.
However, Infantile Spasms aren't always presented in the same way. Leah's doctors had never seen anyone present the way she did.
"They said she had "Leah Syndrome," Williams said. "Intervention is a big thing in helping in the end. If it wasn't for all the help and prayers, she wouldn't be where she is."
While there are other kids in the area who suffer from Infantile Spasms, the Williamses haven't met any in person. They have found a lot of support from families online who are in the same situation.
"Most of the support comes from people who get it and who actually live it. It's kind of neat in a way," Leah's mother said.
The family credits the work of the doctors, especially Dr. Graham, for Leah's progress.
"She wanted to work with us, she didn't give up, and she trusted me," Williams said. "She didn't blow us off and she really pursued it as much as we wanted to. We had a good team."
The Williamses were also fortunate to have Dr. Christine Roman-Lantzy, a CVI specialist, on their team. Roman-Lantzy is based in Pittsburgh and it was a big deal for her to see Leah. Mrs. Williams explained the doctor gets paid to treat patients in other countries.
"And here she is in our own backyard," Williams said.
The whole experience taught the Williamses the importance of fighting for their child.
"You have to be an advocate for your kid," Brandon Williams said. "I never dreamed you'd have to advocate for a kid like that with appointments."
When Leah was 11 months old, her mother started to miss more work than she attended. She eventually decided to quit her job in order to be there for her children.
"I didn't want the boys to resent Leah. She was taking up so much of our time and I was working. She is a full-time job. Even when she's sleeping," she said.
Williams' job, though, seemed to set her up with the necessary skills to deal with Leah's situation. As a medical secretary, she was already accustomed to dealing with doctors and insurance, she knew all the medical and pharmacological terminology.
"The biggest thing was learning to network," she added.
For her own safety, Leah requires an adaptive adjustable bed with rails.
Fortunately, the family's insurance covered the $10,000 piece of furniture. However, her other necessary equipment hasn't always been easy to acquire. According to Williams, the family had to fight for each piece along the way.
She credits state Rep. Camille "Bud" George for a lot of help in that fight.
Leah's parents hope her next piece of equipment will be an iPad, which they're working to get. The iPad could help Leah in several developmental areas, especially communication. Various applications are available for the device to aid with development, vision, and cognition.
The family also had to make modifications around their home in order to protect Leah.
"You have to think of her and what's in her best interest," Brandon Williams said.
Leah now attends school and has a team of therapists and teachers to help her along the way. The beautiful little girl enjoys swinging, riding her adaptive bicycle, and playing with her toys.
"She's happy," her dad said. "She has no idea anything's different."



http://www.thecourierexpress.com/tricountysundaytrilocal/900219-349/leah-gets-high-tech-treatment.html

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Leah Williams was the first child in Clearfield County, PA to be diagnosed with Infantile Spasms Syndrome, also known as West Syndrome, and Cortical Visual Impairment. Leah’s eyes function normally, but her brain does not process what her eyes see properly.

Elijah and Noah Williams:

Two wonderful boys. Two wonderful brothers to Leah. They are very dedicated to her and her well being. They help their little sister is so many ways, and some of the ways are absolutely amazing! The love they have for her is so beautiful... Even in doing all of this for their little sister, they battle their own daily fights. Noah and Elijah both see a neurologist (for various reasons), a pediatric pulmonologist for their asthma, and a GI doctor for GERD(reflux). Here is one small example of the Williams schedules.

Noah saw the neurologist a few weeks ago. Elijah saw GI on Friday. Leah will be inpatient this week. She has an endoscopy next Monday to get a new tube. The boys see the pulmonologist next Tuesday and Elijah sees the neurologist next Wednesday.

Due to a high volume of traveling for their children's needs, and only having one income ( Krista has had to quit her job so she could be home with Leah) finances are very tight. They struggle from week to week. You would never be able to tell, because they never ask anyone for any help. They do what they have to do to get through. Their love for each other is what keeps them such a strong family. They truly deserve the help. This is where I come in. I want things to be a little bit easier for them. They have so much going on with their children that worrying about finances should not be one of them, especially right before Christmas. I want to just bring everyone together, and help lend a hand to the Williams. I would love nothing more than to give them just a couple of months of being worry free. So they have money to travel to their appointments, and like now Leah is admitted into the hospital. It's time like these that they need the help. So please, every penny counts. Let's help this wonderful family out :) Let's also make sure that they CAN have a wonderful Christmas too. These little kiddo's deserve it so much....
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