A Fontana child is fighting for her life against a rare genetic disorder called Batten disease while her parents are trying to raise awareness by encouraging parents to look for early signs.<\/p>\n
For Lucy Antillon, walking around a playground is no small feat. Each step feels as if it\u2019s a giant leap.\u00a0<\/p>\n
The struggle of the 4-year-old girl came unexpectedly as she was able to start talking at 6 months, showing the early signs of childhood development.\u00a0<\/p>\n
Lucy\u2019s parents, Destiny Moore and Sean Antillon, said there were no indications of the challenges to come.<\/p>\n
\u201cShe was progressing at such a rate. We were just really excited about it,\u201d the mother recalled. \u201cAnd then we started having regression.\u201d<\/p>\n
At age 2 came seizures and a series of medical diagnoses from diabetes to epilepsy that got more and more severe.<\/p>\n<\/p>\n
Lucy\u2019s neurologist, Dr. Gamil Fteeh with Kaiser Permanente in Fontana, said the rare type of seizure Lucy was having prompted him to do more evaluation and suggested to her parents that they do genetic testing on Lucy.<\/p>\n
After the test results came out, Lucy was diagnosed with Batten disease, which prevents the brain from breaking down fat within its own cells and causes speech problems. It can be fatal, and it has no cure.<\/p>\n
\u201cWithout treatment, most children pass by age 10,\u201d said. Dr. Darian Esfahani, Pediatric Neurosurgeon with Kaiser Permanente Los Angeles Medical Center.<\/p>\n
Despite the devastating news that would make one feel as if the world is collapsing, Lucy\u2019s parents had to get up and fight for their little girl.\u00a0<\/p>\n
\u201cIt\u2019s OK to say I cry in my truck on the way to the gym in the mornings,\u201d Sean Antillion, Lucy\u2019s father, said,<\/p>\n
Dr. Fteeh presented Lucy\u2019s parents possible solutions \u2013 bringing together a team that includes Dr. Esfahani, who discovered Lucy has the one form of Batten disease that is treatable. Kaiser Permanente is one of only two facilities in LA (and one of the five in California) that offer the procedure for Lucy\u2019s type of Batten disease.<\/p>\n
\u201cIt’s a small reservoir or bubble that we place underneath the skin.That can then bypass the brain’s natural barrier and let the medication get to the brain itself,\u201d Dr. Esfahani explained how the procedure works.\u00a0<\/p>\n
Since March, Lucy\u2019s family drives from Fontana for the procedure with Dr. Esfahani to spend a long, stressful and draining day for her treatment. But for her parents, having every minute with the little girl with every ounce of hope is worth the 15-hour day.<\/p>\n
\u201cNow we’re kind of looking forward to it because now we see her progress,\u201d Lucy\u2019s dad said as his daughter is beginning to walk and talk better.<\/p>\n
\u201cWith this treatment, we\u2019re getting her back slowly,\u201d Lucy\u2019s mom said. \u201cThis is a way for us to be able to slow down the disease in hopes a cure comes along.\u201d<\/p>\n
Dr. Fteeh said there are hopeful signs that medical science is getting close to finding the cure.<\/p>\n
\u201cGene therapy is the promising future for a plenty of rare neurological disorders in children,\u201d the neurologist said. \u201cThat\u2019s what I’m hoping for Lucy.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"A Fontana child is fighting for her life against a rare genetic disorder called Batten disease while her…\n","protected":false},"author":3,"featured_media":106564,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5123],"tags":[1582,276,245,210,2961,224,5337],"class_list":{"0":"post-106563","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-los-angeles","8":"tag-ca","9":"tag-california","10":"tag-children","11":"tag-health","12":"tag-la","13":"tag-los-angeles","14":"tag-losangeles"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@us\/114945813619606529","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/106563","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/comments?post=106563"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/106563\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media\/106564"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media?parent=106563"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/categories?post=106563"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/tags?post=106563"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}