She says she believes her epileptic & autistic son will benefit
By Kim Chiomento, Correspondent, The Times
KENNETT – For Sara Boninfante and her family, supporting the approval of medical marijuana has become a top priority. Her journey to find answers and relief for her severely autistic and epileptic son, Blake, has led her to advocate for and help to educate the public; on this controversial topic.
Blake’s infancy was plagued with severe allergies, full-body rashes, reflux, unusual sleep patterns, and extremely fussy behavior. Sara recalls, “As a new mom you question yourself. In my heart I felt something wasn’t right, but I had no comparison; I just thought this must be how it is…you hear parenting is tough, and it certainly was.”
At the age of nine months, Blake wasn’t sitting up or hitting other developmental milestones. Initially, Sara’s pediatricians took the “let’s wait and see” approach. It was not until Sara’s in-laws strongly encouraged her to push further for additional testing did she receive two devastating diagnosis.
Blake underwent genetic testing that yielded typical results. He was also sent for an MRI that showed delayed mylenation (the myelin is a sheath that covers nerves that act as pathways in the brain and the peripheral nervous system.) These results yielded more questions than answers with several possible outcomes – it could be degenerative and continue to worsen – or – be delayed. Thankfully for Blake the latter was the case.
Recent research indicates that there may be a link between children with delayed mylenation and autism. At 2 ½, Blake underwent an EEG, with results that were abnormal, but not definitive for seizures; time would tell. He had already begun exhibiting the textbook sensory issues and behaviors associated with children on the autistic spectrum.
When Blake was 3, he took a bad tumble down the stairs. Sara emotionally recalls “I just couldn’t catch him.” It was in the coming weeks after this event that Sara started seeing drastic changes in Blake’s behavior –odd movements and sudden upward jerking of his arms. Blake was diagnosed with severe myoclonic seizures; and he was prescribed anti-seizure medications.
Blake’s preschool advised the Boninfantes that he should probably wear a protective helmet. For autistic children with sensory issues, simple tasks like brushing their teeth and hair can be an agonizing experience. Sara says, because of Blake’s many sensory issues, “Making him wear a helmet for safety was just not an option.”
Following a lengthy Medicare appeal process, a ten hour-per-week Home Health Aid (HHA) was eventually approved for Blake to be used during the difficult morning hours when Blake’s seizures occur most frequently. The HHA assists with keeping him safe and helps to get him ready for school so that Sara can prepare his breakfast, get dressed, and complete basic morning routine tasks. “The HHA has been wonderful.”
Unfortunately, after pursuing five different types of epileptic medicines, none of them yielded acceptable results for Blake. However, Sara has found some moderate success with implementing the modified Atkins Diet (low carbohydrate, higher fat consumption) and she has seen about a 50% reduction in seizures, although, he is still seizing hundreds of times a day. On a good day, Blake experiences more than 100 seizures when he awakes and more throughout his day. There are days when over 400 seizures have been documented; an exhaustive and heart wrenching experience for the Boninfantes.
For a second time in recent history, Sara’s in-laws were a key influence; they had watched a documentary on the positive effects of Hemp Oil and Medical Cannabis on mitigating seizures. “WHAT!?!?” Sara remembers reacting, “You want me to give my baby ‘pot?’ — I thought they were totally crazy.”
As time passed and the medical marijuana controversy travelled to the forefront of national news, Sara became intrigued, began doing research and learned that people with epilepsy and other seizure disorders were experiencing positive results. She became particularly interested in a specific cannabis oil blend known as Charlotte’s Web Hemp Strain (named after 5 year-old Charlotte Fiji who experienced a remarkable recovery from intractable epilepsy after using this oil blend.) This oil blend does not have the hallucinogenic properties that marijuana “smoking” versions do; and is administered in very specific dosages, much like traditional medicine. The Charlotte’s Web strain grown in Colorado has tested as high as a 50:1 cannabidiol (CBD)/THC low ratio. The high CBD strain is what is critical for epilepsy and other conditions.
Currently, Sara is on two wait lists to receive the Charlotte’s Web strain. The first list is to receive medical cannabis via shipment from Colorado should Pennsylvania legalize its use. The other, should obstacles be overcome on both the state and federal levels to allow for the legal import of cannabis, she will be able to do so. Due to high demand, she is also on a waiting list in Colorado for those who are willing to relocate to this cannabis-legal state. She and her husband are in the process of exploring a move to Colorado to establish residency so that Blake can receive the Charlotte’s Web treatment under the supervision of a doctor; and she says that is the key.
“Moving to Colorado might seem like an easy answer,” says Sara, “but, there are also many hardships besides those associated with any move. For example, there will be no more road trips to grandma’s in Virginia as it is a federal offense to travel out of state with legal cannabis, which could mean large fines, jail time and potentially even losing Blake.” Sara acknowledges that there is also the frightening reality that it may not work for Blake, “but we are willing to take that risk with the hopes of bringing some normalcy to his life.”
Sara speaks passionately, “We seek the immediate legalization of medical cannabis in Pennsylvania under the supervision of a medical doctor for children and adults suffering from epilepsy. It also needs to become available to people with other serious, medical concerns.”
Sara urges the residents of Pennsylvania to research and support PA Senate Bill 1182-The Compassionate Use of Medical Marijuana Act; which seeks to legalize the medical use of cannabis. The national movement is gaining traction; most recently, on July 20, Illinois legalized medical marijuana use for children with seizures.
Despite all of the challenges, Sara has also found blessings. At the top of her list is the Kennett Consolidated School District (KCSD) specifically, Blake’s school, Greenwood Elementary. “Greenwood is an incredible place,” says Sara, “We explored other specialized schools and felt that nothing compared to the inclusion, 1 on 1 instruction and love…yes, my son is LOVED at Greenwood.” Sara describes David Bickel, Greenwood’s Autism Support Teacher, as “a gift from God.” And her praise continues to Greenwood’s school nurse, Tricia Harlan, and Nurse Tricia’s ability to manage Blake’s seizures so that he doesn’t always have to leave school as “extraordinary.”
Sara also feels that a key component of Blake’s education has been inclusion. Now entering the fifth grade, Blake’s ability to participate in traditional classroom activities has become more challenging and Greenwood has adapted to his changing needs. While Blake does still participate in traditional P.E., art and music classes, Greenwood ensures that “typical” students participate in activities within Blake’s autism support classroom. Sara describes that as a win-win. As schools preach acceptance and tolerance, Greenwood makes it happen in real-life situations for its students.
For now, the Boninfantes remain hopeful PA legislators will act quickly in support of SB 1182 and are encouraging the public to get educated on this high-profile and controversial topic. For more information about PA Senate Bill 1182 visit: www.legis.state.pa.us