Our Kids Stories

Katie:

The Foundation helped Katie, a nine-year-old girl in Rolling Prairie, Indiana. When she was two years old, Katie had a grand mal seizure that lasted 45 minutes. Over the next several months, she experienced additional seizures, and her ability to speak deteriorated rapidly. Katie was eventually diagnosed with Landau-Kleffner Syndrome, which causes seizures and results in an inability to speak. Over the following years, Katie received speech therapy and a variety of anti-seizure medications. The medications have helped to keep her seizures under control, but she has recovered only a portion of her ability to speak. Katie had recently been using an augmentative speech device at school and had been doing well with it.

Jaden:

Jaden, a one year-old boy in Upper Black Eddy, Pennsylvania, needed the Foundation's help. In January, 2009 he was diagnosed with an eye cancer called Bilateral Retinoblastoma. Jaden had multiple tumors in both eyes and had trouble seeing. He immediately began chemotherapy. Jaden's insurance would only pay for intravenous chemotherapy, not direct eye injections, which were a crucial step in his treatment. The Foundation agreed to cover the cost of the direct chemotherapy injections.

Scott:

Scott, a boy from Anna, Texas, was born with Dravet Syndrome, which is a severe and highly drug-resistant seizure syndrome. Scott's doctor recommended a new drug that works very well to control his seizures, but Scott's insurance did not cover this drug, so his family had to pay for it out of pocket. Due to expenses from doctor's appointments and hospital visits, the large cost of this medicine was not affordable for Scott's family. The Foundation was able to help cover the cost of Scott's seizure medication.

Rachel:

The Foundation helped Rachel, a 12-year-old girl from the near West Side of Cleveland. She has a chromosome abnormality and severe scoliosis. After spinal fusion surgery, her only hope to be able to walk normally is through intensive physical therapy. The family could not continue the physical therapy, though, after funds from their medical insurance had been exhausted. The Foundation paid for the needed physical therapy.

Julia:

The Foundation paid for a specialized vest for Julia, a two-year-old girl from Stow, Ohio. She and her twin brother, Tommy, have cystic fibrosis. As part of their treatment, they must do frequent airway clearance. Their doctor prescribed specialized vests to help accomplish this, each costing over $12,000. Their insurance would pay for only one unit, which they share. Due to their young age and the treatments that they need, having only one vest between the two of them placed a great hardship on the twins and their family.

Samuel:

The Foundation bought a specialized formula for Samuel, a two-year-old boy from Broadview Heights, Ohio. He was born with multiple food allergies that prevent him from eating anything of substance. He only gets his nutrition from a formula called Neocate + 1, which costs over $1,500 per month. When the family's insurance company stopped paying for the formula, the family was unable to afford the cost, so the Foundation paid the cost.

Alesandro:

The Foundation paid for a cranial helmet for Alesandro, a six-month-old boy in San Antonio, Texas who had been diagnosed with plagiocephaly, an asymmetrical formation of the head. If untreated, this condition can cause serious problems as the child develops. The condition can be corrected with cranial bands or helmets, which are worn for several months until the head has developed into a normal shape. Alesandro's family could not afford the cost after Medicaid denied coverage.

Bryan:

Bryan, a five year-old boy who lives in Austin, Texas, was born with a birth defect that resulted in the absence of his right ear canal, along with malformation of his right outer ear. Bryan has no hearing in his right ear. Bryan's parents were told by doctors that Bryan will need surgery to aid his hearing. A specialist concluded that Bryan is still too young for surgery, and the best route to aid his hearing would be a BAHA4 (bone anchored hearing aid) to be held in place by a headband specially designed for this sound processor. The retail price for a BAHA4 processor is around $7,200. The Children's Ear Nose & Throat Center in Austin offered a significant discount, and the family was able to obtain additional assistance from The Children's Hearing Aid of Texas program and the First Hand Foundation, but a funding gap of $2,000 remained. The Shannon Foundation paid this last $2,000 and Bryan was able to get his BAHA4, shown being worn by Bryan in this photo. Bryan can now hear out of his right ear, and his family continues to follow up with his medical care while awaiting the time for his surgery as he grows. Bryan's social worker reports that Bryan is now thriving in school.