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";s:4:"text";s:8166:"This article is now fully available for you, Please verify your e-mail to read this subscriber-only article in full. "We cherish things like eye contact, grasping our finger, smiles, weight bearing through their legs, head control - everything we took for granted with our son," she said. But our family was still perfect. The Hartley Hooligans are a pair of sisters, Claire and Lola Hartley, born with microcephaly, cerebral palsy, dwarfism, epilepsy, and many other conditions. The two girls require 24-hour care. © 2007-2020 Literally Media Ltd. No thanks, take me back to the meme zone! I am not saying this is the answer for every child, but for our daughters, this natural route... feels right.". Special Report: Zeroing in on the Zika virus, WHO moves into high gear to combat Zika, microcephaly: Expert, https://www.youtube.com/watch?v=EGMJwxqR-Jc. "I remember thinking after we had Claire that we'd have the 'perfect' family because we'd have this new house, a boy, a girl and a couple of dogs, and life would be exactly what we planned. Gwen Hartley married her high school sweetheart Scott and had three children, Cal, Lola and Claire who are 17, 14 and 9. She recalls celebrating Microcephaly Awareness Day for years without anybody ever knowing about the condition or focusing a lot of attention on it. 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. The Hartley's decided to have another child after being told that there was a 25 percent chance for reoccurrence. She was immediately diagnosed with microcephaly, a condition meaning small head. She has almost 17,000 photos on her smartphone, all backed up. I just don't want these moms to feel like it's the end of the world, like I felt in the beginning.". High Score They can relate in a way that people with only typical children cannot. For Mrs Hartley, who remembers how anxious she felt during Claire's first year, the prospect of losing her two daughters is far more daunting than living with their conditions. Mr Hartley, formerly a teacher, now works as a glass blower. Their brother Cal is Superman. Despite her usual mild persona, Claire does possess the sassiness of the typical teenager in her own way. You can read this subscriber-only article in full, All done! Favorites The sisters, both of whom have various other medical conditions due to their microcephaly, have become infamous on the Internet for their physical deformities as well as what is seen as an exploitative attitude from their parents. I bawled," said Mrs Gwen Hartley, 41, who is from Kansas in the United States. Low Score Reach Staff Reporter Gabriela Fernandez here. After having Claire, our focus definitely changed. No. 3,618 talking about this. He works six days a week but is still very involved with caring for their children, she said. -- George Sand Please direct news tips and press releases to mediacentereditors@gmail.com, A mother's journey with the condition that affects two of her children, With the current media buzz about the zika virus and microcephaly, Gwen Hartley, from the blog ". In an e-mail interview with The Straits Times, she spoke of the joy, and pain, of living with two children affected by the condition. "I am blown away by the sheer cost of the equipment needed to simplify my girls' lives," she said. In-depth analyses and award-winning multimedia content, Get access to all with our no-contract promotional package at only $0.99/month for the first 3 months*. And we were terrified of losing both of them," she told The Straits Times. "Claire and Lola have made me a better me and I would say Cal made me a better me also. Hartley admits that she feels torn about the massive attention the media is placing on the virus due to the link between microcephaly and the zika virus. She felt frustration when hearing about others coming to her for advice because doctors told them that their child would not be able to live up to a certain age or be able to walk. While she has met many parents of the group in person, she feels as if she personally knows them because of their support through the many difficult times. Claire is learning to sit, kneel and stand, and is now moving her hand to communicate. The type who would go to the ends of the earth to help their children optimize their lives. Hartley wonders if her daughter would be the type of child who enjoys playing dress up if she were typical. Hartley and her husband were initially devastated, but now look back and realize that she is getting the best of both worlds. For the two sisters, everything from eating, moving, grasping things and making eye contact has been difficult. Reports of cases in Brazil indicate that many of the children are severely affected. SEE ALSO: Zika Virus Case Reported in Los Angeles, "Our life is still our life," says Hartley. Referring to her children as "tiny superheroes", she wrote: "Any child who has gone through something beyond difficult and come out the other side even stronger is a hero in my book .". Lola, too, has microcephaly, as well as dwarfism, epilepsy and other conditions which have severely affected her development. "It wouldn't be my first choice for my child to be more physically and cognitively developed, but at the same time there's things that she [Lola] can do that she would not do if she were typical.". Hartley described the struggles of thinking, "Why me?" "I want them to understand that life is so joyful and so happy and so positive and that these kids are gonna help them love on such a deeper level than they ever even thought possible," she said. The Hartley Hooligans is a mommy blog run by Gwen Hartley, who raises three children, two of whom have severe microcephaly along with cerebral palsy, epilepsy, and a myriad of other conditions eventually discovered to be caused by asparagine synthase deficiency, a condition which contributes to brain degradation over the course of these girls' lives. By registering, you agree to our T&C and Privacy Policy. Neither can walk, talk or do many of the things other children take for granted, but they have also led longer and healthier lives than doctors thought they would. She ignored the doctor's instructions and chose not to put her daughter on a host of recommended medications. On her blog, an entry from Halloween 2015 shows the family in superhero gear. The virus has since spread to more than 20 countries in Latin America. Although she realizes from her experiences that doctors hold the best intentions, nobody knows what the future holds for their children. An online community on Facebook, consisting of other families dealing with microcephaly, have supported Hartley throughout her journey. Claire is dressed in a Wonder Woman outfit, while the diminutive Lola was a pint-sized Incredible Hulk. The gift link for this subscriber-only article has expired. I never want to forget them," she said. All rights reserved. It was very hard to adjust to the fact that we'd be the parents of not one, but two special needs children. About 10 per cent have normal intelligence, some never walk or talk, while many have disabilities but are high-functioning. Both are small - Claire is the size of a toddler (about 10kg) and Lola a three-month-old baby (5.4kg). They suffer a large degree of brain tissue loss, have smooth brains and smaller cerebellums, which play a role in motor control, The New York Times reported. Both Ms Hartley and her husband are believed to carry a rare gene which caused it. In May 2015, Hartley wrote an open letter to families who just had children with special needs, due to the response she was receiving from her blog. "I am sad that so many babies are being born with microcephaly, but they are the cutest little babies I've ever seen... My hope is that support can come to those families whose babies are affected," Mrs Hartley said when asked about the cases in Brazil. Lola is "more visually attentive", and is using her nose to answer yes or no questions. This means they have little to no intellect, can't walk, talk, or even move their limbs in any useful way. 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