Both were born with microcephaly, the birth defect spreading like wildfire across South America along with the Zika virus. But Hartley’s priorities shifted in those 12 months. Hartley writes about her family's life on a blog called The Hartley Hooligans. With the current media buzz about the zika virus and microcephaly, Gwen Hartley, from the blog "Hartley Hooligans" gives readers an insight into her experiences of having two children with microcephaly. Gwen's family has a strange and playful sense of humor, something you can check out daily on her blog, The Hartley Hooligans. totally do this," Hartley says. About 10 per cent have normal intelligence, some never walk or talk, while many have disabilities but are high-functioning. For the Hartleys, much of this is paid for with private and public health insurance, and help from special needs organisations. But the feisty mum and former teacher still finds time to write about the daily travails of their family on her blog, The Hartley Hooligans. "We were floored that it happened a second time. You can tell by reading Gwen's blog "The Hartley Hooligans" that she's meticulous about loving and caring for her babies and maintains a pretty incredible sense of humor at the same time. But a log-in is still required for our PDFs. Meet two Kansas moms who are raising kids with the birth defect. The chance of the condition occurring in their children is 25 per cent. Pretty much like every other family you know. What causes microcephaly in a child? In her reply to The Straits Times, she said they have learnt to live "in the now" and to take less for granted. I never want to forget them," she said. When the family felt settled into their routine and ready to welcome another child into their lives, they were told that the chance for microcephaly reoccurrence was 25 percent. She ignored the doctor's instructions and chose not to put her daughter on a host of recommended medications. Looking after yourself and your family. Lola, too, has microcephaly, as well as dwarfism, epilepsy and other conditions which have severely affected her development. That can often lead to stares from strangers and rude remarks, so the love the girls are getting from the basketball team is extra meaningful. Kansas Parents of 2 Girls With Microcephaly Share Joys, Struggles of Family Life. When Claire Hartley, 12, was born, doctors diagnosed her with microcephaly. To go grocery shopping, the Kansas mum needs to arrange for a baby sitter; to get a full night's rest, they have engaged a night nurse for the past few years; and to go anywhere with her two daughters requires both parents. But, despite beating the life expectancy odds by a mile, the two have pretty severe disabilities including dwarfism, spastic quadriplegia, cerebral palsy and epilepsy, which Gwen and her "team" treat with all sorts of physical therapies, essential oils, homeopathics and chiropractic care. She hilariously refers to herself as a "real-life, damn near Snow F'ing White (super pale and gifted at dwarf wrangling)," on the blog. All rights reserved. The Hartley Hooligans are a pair of sisters, Claire and Lola Hartley, born with microcephaly, a medical condition which is signified by a head circumference several standard deviations below the average. Because they make it look beautiful. I am not saying this is the answer for every child, but for our daughters, this natural route... feels right.". In an email interview with Romper, Gwen tells Romper that, though her children are amazing, she feels for people who are going to raise children with microcephaly, because it is difficult: For the Hartley family, microcephaly was a genetic disorder they never saw coming. But Claire survived, even though she also suffers from dwarfism, cerebral palsy, epilepsy and scoliosis. Claire has microcephaly, a condition in which a baby is born with an abnormally small head and brain. Gwen and Scott Hartley know that their daughters are different. In 2006, Mrs Hartley had a second daughter, Lola Grace. If your child has microcephaly, it’s easy to get caught up in looking after her. Entry from Halloween 2015 shows the family in superhero gear, as well as dwarfism cerebral., exposure to drugs, alcohol or toxins, and is now fully available for you, Please your. Member of the children are severely affected needed to simplify my girls ' lives, '' said Mrs Hartley a... 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