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" When we were first introduced to Jaxon Strong, a child born with half his brain and skull missing, he had just celebrated his 1st birthday\u2014a milestone his parents never thought he&amp;#039;d reach.  Dubbed a &amp;quot;miracle baby,&amp;quot; Jaxon stole our hearts last August, with his curious, bright blue eyes and blond ringlets. We followed up with Jaxon when he said &amp;quot;I love you&amp;quot; for the first time and watched him fulfill every child&amp;#039;s dream of meeting Santa, but now, as Jaxon&amp;#039;s parents prepare for his second birthday, the story of how he&amp;#039;s defied the odds has become all the more topical.   Jaxon has microhydranencephaly, which is characterized by severe underdevelopment of the brain. It&amp;#039;s a form of microcephaly, a condition that&amp;#039;s been prevalent in the press recently due to its possible link to the Zika virus.  Since the World Health Organization declared the spread of the Zika virus an international public health emergency because of its ties to this birth defect, Jaxon has been propelled back into the spotlight.  Although it&amp;#039;s unclear if Jaxon&amp;#039;s case is related to Zika, Jaxon&amp;#039;s dad, Brandon Buell, feels grateful that through his son he&amp;#039;s been able to spread awareness of the disability.   &amp;quot;Everyone&amp;#039;s freaking out saying microcephaly is a death sentence, and it&amp;#039;s not. Even if you had to go through it, your child can survive. Your child can live a good-quality life,&amp;quot; he told Redbookmag.com.  Brandon and his wife, Brittany, 27, who he refers to as &amp;quot;his strength&amp;quot; were first told something was wrong with Jaxon during Brittany&amp;#039;s 17-week ultrasound.  &amp;quot;They warned us we could lose the pregnancy, give birth to a stillborn child, have all types of complications. They didn&amp;#039;t expect him to make it, and if they did, they seriously doubted his quality of life. We were absolutely distraught,&amp;quot; Brandon recalls. Jaxon&amp;#039;s doctors gave the Buells the option to terminate the pregnancy, but the couple had their doubts.  &amp;quot;I remember sitting in the chair next to Brittany, and we were dumfounded. All we could think was, Is this real? Is this a nightmare?&amp;quot;  Brandon asked if Jaxon was in any pain, and if his wife&amp;#039;s health would be in jeopardy if she took Jaxon to term.  Doctors assured him that Jaxon wasn&amp;#039;t suffering and Brittany would be fine. The worst case, they said, is that Jaxon wouldn&amp;#039;t make it. But he did.  On August 27, 2014, Jaxon was born.  &amp;quot;From day one, there was a fight in him that has never stopped. Immediately, he was showing that there was something more that he could offer\u2026 something more he could give, and he was going to start by defying our expectations.&amp;quot;  But Jaxon&amp;#039;s doctors didn&amp;#039;t exactly agree with Brandon&amp;#039;s optimistic outlook. &amp;quot;On day two, I was holding my brand-new child on my chest as the doctor told me that he highly doubted if Jaxon would be able to see or hear. &amp;#039;He probably would never know if he&amp;#039;s hungry, walk, or talk,&amp;#039;&amp;quot; the physician warned.  During the stark prognosis, Brandon heard a loud noise, and as if on cue, Jaxon jumped up into his arms.  &amp;quot;I was snuggling him in the chair, and suddenly Jaxon jumps, and all of us saw it. Jaxon, with his wide eyes, had responded.&amp;quot; The doctor, having no idea how to respond, abruptly walked out of the room without saying a word. &amp;quot;We never saw him again,&amp;quot; Brandon recalls. That was the first of many times the Buells had to fire physicians.  &amp;quot;We&amp;#039;d ask for help, and they&amp;#039;d say, &amp;#039;How much do you wanna do?&amp;#039; and, they&amp;#039;d offer this discouraging common refrain: &amp;#039;He&amp;#039;s not going to be here forever.&amp;#039; They&amp;#039;ve had to fight to find doctors who, instead of dismissing Jaxon, are &amp;quot;truly fascinated by him,&amp;quot; which led the Buells, from Orlando, FL, to a crack team at Boston&amp;#039;s Children Hospital that is constantly gleaning new insights from Jaxon&amp;#039;s case.  Although Jaxon certainly struggles\u2014he has multiple seizures and acid reflux that causes him to throw up several times a day, and he can&amp;#039;t crawl, sit up, or eat fully on his own\u2014Brandon says his boy is &amp;quot;learning every day.&amp;quot; Jaxon recently using a pacifier, which may not seem groundbreaking to most parents, but it&amp;#039;s an encouraging sign that he may soon be able to get off his feeding tube.  He even just had his first swim.   And he got to meet Mickey, though he enjoyed napping on the monorail more.   &amp;quot;He&amp;#039;s only getting stronger, and his health is improving. He&amp;#039;s babbling, he loves to laugh, he loves to snuggle. He has an amazing personality. He&amp;#039;ll look into our eyes and start smiling, giggling.&amp;quot; He also just started saying &amp;quot;mama&amp;quot; and &amp;quot;dada.&amp;quot;  Brandon shares these sweet morsels with us and on Jaxon&amp;#039;s community Facebook\u2014which has become a support group\u2014to remind people that regardless of what they&amp;#039;re told by doctors, &amp;quot;there&amp;#039;s still hope here.&amp;quot; &amp;quot;We don&amp;#039;t know what tomorrow might bring. Tomorrow might be his last day, but it doesn&amp;#039;t matter because his life has meant so much already.&amp;quot;  &amp;quot;Just this morning I was sent a message on Facebook from a young mother who found out at 19 weeks pregnant that her child has anencephaly [a form of microcephaly] and the doctors said she should &amp;#039;absolutely abort&amp;#039; because the child &amp;#039;won&amp;#039;t make it.&amp;#039;&amp;quot; Brandon comforted the expecting mother, reminding her that the fact that Jaxon is thriving doesn&amp;#039;t have to be the exception.  The onus Brandon feels to help parents in similar situations extends well beyond that young mother.  &amp;quot;We feel a responsibility now that this Facebook page has turned into a community page. Thousands of people are sharing their stories, and that&amp;#039;s just as important as my son.&amp;quot;  &amp;quot;This shouldn&amp;#039;t end with Jaxon. Let&amp;#039;s say we have him for 10 years, and he&amp;#039;s gone\u2014we&amp;#039;re not just going to close up shop. His life has a legacy. He can benefit the next family that would have been clueless before hearing his story.&amp;quot; Brandon&amp;#039;s words are not just sweet sentiments. The Buells have started the Jaxon Strong Foundation, a non-profit organization to fund neurological research. Jaxon is, of course, the inspiration for the foundation, but the Buells started it to\u00A0advocate for all individuals living with disabilities.   &amp;quot;You don&amp;#039;t have to believe in a higher power to believe that there&amp;#039;s something happening here, and that his life can benefit the medical world. Even though it looks bleak, there&amp;#039;s hope here.&amp;quot; Regardless of how long Jaxon, who just turned 21 months old, has left, Brandon sees his son as a blessing.  &amp;quot;Just because his life might be short, his purpose is amazing. He&amp;#039;s touched more lives than I ever will.&amp;quot; To learn more about Jaxon&amp;#039;s story or to donate to the Jaxon Strong Foundation, click here.  "^^<http://www.w3.org/2001/XMLSchema#string>
<http://www.redbookmag.com/life/news/a44510/jaxon-strong-foundation/>