{"id":12710,"date":"2014-07-24T12:00:19","date_gmt":"2014-07-24T16:00:19","guid":{"rendered":"http:\/\/kennetttimes.com\/?p=12710"},"modified":"2014-07-24T10:54:45","modified_gmt":"2014-07-24T14:54:45","slug":"for-a-kennett-mom-medical-marijuana-issue-is-personal","status":"publish","type":"post","link":"https:\/\/kennetttimes.com\/?p=12710","title":{"rendered":"For a Kennett mom, medical marijuana issue Is personal"},"content":{"rendered":"

She says she believes her epileptic & autistic son will benefit<\/b><\/em><\/span><\/p>\n

By Kim Chiomento<\/strong>, Correspondent, The Times<\/em><\/span><\/span><\/p>\n

\"medical-marijuana\" KENNETT – For Sara Boninfante and her family, supporting the approval of medical marijuana has become a top priority.\u00a0 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.<\/p>\n

Blake\u2019s infancy was plagued with severe allergies, full-body rashes, reflux, unusual sleep patterns, and extremely fussy behavior.\u00a0 Sara recalls, \u201cAs a new mom you question yourself.\u00a0 In my heart I felt something wasn\u2019t right, but I had no comparison; I just thought this must be how it is…you hear parenting is tough, and it certainly was.\u201d\u00a0<\/p>\n

At the age of nine months, Blake wasn\u2019t sitting up or hitting other developmental milestones. Initially, Sara\u2019s pediatricians took the \u201clet\u2019s wait and see\u201d approach. It was not until Sara\u2019s in-laws strongly encouraged her to push further for additional testing did she receive two devastating diagnosis.<\/p>\n

Blake underwent genetic testing that yielded typical results.\u00a0 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.)\u00a0 These results yielded more questions than answers with several possible outcomes \u2013 it could be degenerative and continue to worsen – or – be delayed. Thankfully for Blake the latter was the case.<\/p>\n

Recent research indicates that there may be a link between children with delayed mylenation and autism. \u00a0At 2 \u00bd, 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.<\/p>\n

When Blake was 3, he took a bad tumble down the stairs. Sara emotionally recalls \u201cI just couldn\u2019t catch him.\u201d\u00a0 It was in the coming weeks after this event that Sara started seeing drastic changes in Blake\u2019s behavior \u2013odd movements and sudden upward jerking of his arms.\u00a0 Blake was diagnosed with severe myoclonic seizures; and he was prescribed anti-seizure medications.<\/p>\n

Blake\u2019s preschool advised the Boninfantes that he should probably wear a protective helmet.\u00a0 For autistic children with sensory issues, simple tasks like brushing their teeth and hair can be an agonizing experience.\u00a0 Sara says, because of Blake\u2019s many sensory issues, \u201cMaking him wear a helmet for safety was just not an option.\u201d<\/p>\n

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\u2019s seizures occur most frequently.\u00a0 \u00a0The 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. \u201cThe HHA has been wonderful.\u201d<\/p>\n

Unfortunately, after pursuing five different types of epileptic medicines, none of them yielded acceptable results for Blake. \u00a0However, 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.\u00a0 There are days when over 400 seizures have been documented; an exhaustive and heart wrenching experience for the Boninfantes.<\/p>\n

For a second time in recent history, Sara\u2019s in-laws were a key influence; they had watched a documentary on the positive effects of Hemp Oil and Medical Cannabis on mitigating seizures.\u00a0 \u201cWHAT!?!?\u201d Sara remembers reacting, \u201cYou want me to give my baby \u2018pot?\u2019\u00a0 — I thought they were totally crazy.\u201d<\/p>\n

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.\u00a0 She became particularly interested in a specific cannabis oil blend known as Charlotte\u2019s Web Hemp Strain (named after 5 year-old Charlotte Fiji who experienced a remarkable recovery from intractable epilepsy after using this oil blend.)\u00a0 This oil blend does not have the hallucinogenic properties that marijuana \u201csmoking\u201d versions do; and is administered in very specific dosages, much like traditional medicine.\u00a0 The Charlotte\u2019s Web strain grown in Colorado has tested as high as a 50:1 cannabidiol (CBD)\/THC low ratio.\u00a0 The high CBD strain is what is critical for epilepsy and other conditions.<\/p>\n

Currently, Sara is on two wait lists to receive the Charlotte\u2019s Web strain. The first list is to receive medical cannabis via shipment from Colorado should Pennsylvania legalize its use.\u00a0 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. \u00a0Due to high demand, she is also on a waiting list in Colorado for those who are willing to relocate to this cannabis-legal state.\u00a0 She and her husband are in the process of exploring a move to Colorado to establish residency so that Blake can receive the Charlotte\u2019s Web treatment under the supervision of a doctor; and she says that is the key.<\/p>\n

\u201cMoving to Colorado might seem like an easy answer,\u201d says Sara, \u00a0\u201cbut, there are also many hardships besides those associated with any move.\u00a0 For example, there will be no more road trips to grandma\u2019s 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.\u201d\u00a0 Sara acknowledges that there is also the frightening reality that it may not work for Blake, \u201cbut we are willing to take that risk with the hopes of bringing some normalcy to his life.\u201d<\/p>\n

Sara speaks passionately, \u201cWe seek the immediate legalization of medical cannabis in Pennsylvania under the supervision of a medical doctor for children and adults suffering from epilepsy.\u00a0 It also needs to become available to people with other serious, medical concerns.\u201d<\/p>\n

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.\u00a0 The national movement is gaining traction; most recently, on July 20, Illinois legalized medical marijuana use for children with seizures.<\/p>\n

Despite all of the challenges, Sara has also found blessings.\u00a0 At the top of her list is the Kennett Consolidated School District (KCSD) specifically, Blake\u2019s school, Greenwood Elementary. \u201cGreenwood is an incredible place,\u201d says Sara, \u201cWe 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.\u201d\u00a0 Sara describes David Bickel, Greenwood\u2019s Autism Support Teacher, as \u201ca gift from God.\u201d\u00a0 And her praise continues to Greenwood\u2019s school nurse, Tricia Harlan, and Nurse Tricia\u2019s ability to manage Blake\u2019s seizures so that he doesn\u2019t always have to leave school as \u201cextraordinary.\u201d<\/p>\n

Sara also feels that a key component of Blake\u2019s education has been inclusion.\u00a0 Now entering the fifth\u00a0grade, Blake\u2019s ability to participate in traditional classroom activities has become more challenging and Greenwood has adapted to his changing needs.\u00a0 While Blake does still participate in traditional P.E., art and music classes, Greenwood ensures that \u201ctypical\u201d students participate in activities within Blake\u2019s autism support classroom.\u00a0 Sara describes that as a win-win.\u00a0 As schools preach acceptance and tolerance, Greenwood makes it happen in real-life situations for its students.<\/p>\n

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. \u00a0For more information about PA Senate Bill 1182 visit:\u00a0 www.legis.state.pa.us<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

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.\u00a0 Her journey to find answers and relief for her severely autistic and epileptic son, Blake, has led her to […]<\/p>\n","protected":false},"author":1,"featured_media":12709,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3,4],"tags":[258,55,4963],"class_list":["post-12710","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-featured","tag-health-2","tag-kennett","tag-medical-marijuana"],"_links":{"self":[{"href":"https:\/\/kennetttimes.com\/index.php?rest_route=\/wp\/v2\/posts\/12710","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/kennetttimes.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kennetttimes.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kennetttimes.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kennetttimes.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=12710"}],"version-history":[{"count":0,"href":"https:\/\/kennetttimes.com\/index.php?rest_route=\/wp\/v2\/posts\/12710\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kennetttimes.com\/index.php?rest_route=\/wp\/v2\/media\/12709"}],"wp:attachment":[{"href":"https:\/\/kennetttimes.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=12710"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kennetttimes.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=12710"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kennetttimes.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=12710"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}