", SPH Digital News / Copyright © 2020 Singapore Press Holdings Ltd. Co. Regn. Before Fame. On her blog, an entry from Halloween 2015 shows the family in superhero gear. And if you ever happen to bump into them at the grocery store, just know they don't need you to feel sad for them. Trivia. When Claire Hartley, 12, was born, doctors diagnosed her with microcephaly. If you’re physically and mentally well, you’ll be better able to care for your child. 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. I am not saying this is the answer for every child, but for our daughters, this natural route... feels right.". Until we resolve the issues, subscribers need not log in to access ST Digital articles. And although she's always been a tough-as-nails and funny-as-hell advocate for her two precious daughters, she told the Washington Post she finds the new attention both scary and "extremely painful.". There's Gwen and Scott and their kids, Cal, 17, Claire, 14, and Lola, 10, and two Whippets, Romeo and Cash. Lola, too, has microcephaly, as well as dwarfism, epilepsy and other conditions which have severely affected her development. They have an older son Cal, 17, a straight-A student and basketballer. "We began feeding her an organic diet, using natural supplements, we did energy medicine and homeopathics... We use no medications with them at all. Mrs Gwen Hartley with her daughters, who have microcephaly. She had microcephaly caused by a neuro-metabolic disorder called Asparagine Synthetase Deficiency. 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. Both were born with microcephaly, the birth defect spreading like wildfire across South America along with the Zika virus. It is most often present at birth (congenital). The gift link for this subscriber-only article has expired. September 2018; Molecular Neurobiology 56(6) DOI: 10.1007/s12035-018-1358-4. Gwen Hartley and her daughters, Lola and Claire, who were born with microcephaly, a serious birth defect that causes babies to have extremely small heads and brains. When Claire was born, they were told she wouldn't live more than a year. Claire is learning to sit, kneel and stand, and is now moving her hand to communicate. She has almost 17,000 photos on her smartphone, all backed up. And she talks with raw honesty about her frustrations and struggles — something moms facing a microcephaly diagnosis would definitely find healing and helpful. If you are pregnant, your doctor or midwife will discuss the health of both yourself and your baby at your antenatal visits. And there's no question Gwen has more strength than dozens of people put together. Same with Lola. For the two sisters, everything from eating, moving, grasping things and making eye contact has been difficult. But for up to 4,000 babies in Brazil, microcephaly is said to be linked to the Zika virus, which is carried by the Aedes mosquito. For the Hartleys, much of this is paid for with private and public health insurance, and help from special needs organisations. You can read this subscriber-only article in full, All done! 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. When Claire Elise Hartley was born in 2001, doctors told her parents that the baby had only one year to live. On Feb 1, the World Health Organisation declared the virus an international public health emergency. Perfect was in the eye of the beholder, and to her, she still had the perfect family. Microcephaly is coming in to focus again, this time not only i n the scienti fi c commun ity, b ut also in the general publi c, due to the current epidemic of the Zika viru s, and Zika and microcephaly: What is happening to the babies? "We were floored that it happened a second time. Reports of cases in Brazil indicate that many of the children are severely affected. 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 .". Gwen Hartley married her high school sweetheart Scott and had three children, Cal, Lola and Claire who are 17, 14 and 9. Until recently, Gwen's been quietly blogging about her Claire and Lola's special needs. A Kansas family is mourning the loss of their 13-year-old daughter who was born with a rare condition. The youngest member of the Hartley family, she is one of the subjects of her mother's family blog The Hartley Hooligans. But it’s important to look after your own wellbeing too. So, moms curious about what it's like to raise a baby with microcephaly should take a look at the Hartleys and the amazing Gwen. I never want to forget them," she said. This article is now fully available for you, Please verify your e-mail to read this subscriber-only article in full. Associated With. Her humor must be the best way to cope with the longing for what she wants most of all: as much time as possible with her girls and to do everything she can to make the most of their lives, she says: But in the meantime, she blogs hilariously about "Feta," the tiny rubber chicken that's the only thing Lola has ever voluntarily grasped in her little fists. 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. The special equipment they need for daily life is, in their mum's words "out of control". She wants people to know her daughters are beautiful blessings and that they don't need to feel sorry for her or her family. To many, having a child with a birth defect called microcephaly might seem to be the end of the world. Experts say the prognosis for the child can vary widely depending on the cause of the microcephaly, which can also be a result of a premature fusing of the joints between the bony plates that form an infant's skull and decreased oxygen to the fetal brain. Meet two Kansas moms who are raising kids with the birth defect. "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. Gwen's family has a strange and playful sense of humor, something you can check out daily on her blog, The Hartley Hooligans. While other parents look forward to their children's first steps or words, she had to fight for Claire and Lola to stay alive. Hartley spoke with Romper to share just what it's like to have children with microcephaly. Microcephaly cases are spiking in South America, potentially linked to the Zika virus. "I am blown away by the sheer cost of the equipment needed to simplify my girls' lives," she said. For Claire and Lola, the cause of microcephaly is genetic. 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. Gwen Hartley has stories to share about raising two daughters with microcephaly, the condition that has been linked to the Zika virus. Microcephaly is a condition where a baby's head is much smaller than normal. What causes microcephaly in a child? Claire and Lola Hartley weigh a combined total of 42 pounds and suffer from daily seizures, but Gwen wants everyone to know that a microcephaly diagnosis doesn't mean a death sentence. The sisters, both of whom have various other medical conditions due to their microcephaly, have become infamous on the Internetfor their physical deformities as well as what is seen as an exploitative attitude from their parents. they had.". You have reached your limit of subscriber-only articles this month. Scott and Gwen Hartley have two daughters with the same neurological … If you need support, a good place to start is with your GP and genetic counsellor. Microcephaly is a rare condition that is only reported in 1 in 25,000 babies in Australia. what it's like to have children with microcephaly, Hartleys find themselves the object of people's. Family raises two daughters with microcephaly More than 6,000 Rubik's Cubes went into this one artwork Look back at the career of 'American Idol' contestant Nikki McKibbin Family Life. (a–c) Family V: The proband, II-4 (a), and his brother, II-2 (b), both show microcephaly, high nasal bridge, upslanting palpebral fissures and a short columella. Developmentally, both are more like babies than girls their age. totally do this," Hartley says. Their eldest Cal was born healthy 14 years ago. While researchers have not found a definitive link between Zika and fetal brain damage, reported cases of microcephaly have risen sharply in Brazil, ground zero for Zika. Gwen and Scott Hartley know that their daughters are different. "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. Scott and Gwen Hartley have two daughters with the same neurological condition and they share their milestones online. Despite the enormous changes they have had to make, Mrs Hartley said she thrives on Claire and Lola's "little accomplishments" and the kindness that strangers have shown to them have "restored her faith in humanity". Scott and Gwen Hartley shared on their Facebook page, The Hartley Hooligans Lola is "more visually attentive", and is using her nose to answer yes or no questions. For children with such profound disabilities, her daughters have beaten the odds. And so it did, initially, for a family near Wichita that experienced it — twice. 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. They might not talk specifically about microcephaly, but they can advise you about how to increase your chances of having a healthy baby. "The bath chairs, sitters, standers, stander/sitters, walkers, scales, wheelchairs, double wheelchairs.". The sleep deprivation that new mothers go through is something she has experienced for more than a decade. 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. They said she would die of pneumonia. Claire is dressed in a Wonder Woman outfit, while the diminutive Lola was a pint-sized Incredible Hulk. In her reply to The Straits Times, she said they have learnt to live "in the now" and to take less for granted. Lola died yesterday, 10/12/19, at age 13. Her mother, Gwen, began The Hartley Hooligans in 2011. But Hartley’s priorities shifted in those 12 months. Microcephaly and pregnancy. "I cannot bear to delete pictures of my kids. Share gift link below with your friends and family. But our family was still perfect. Most children with microcephaly also have a small brain and an intellectual disability. Her younger sister, Lola, also has microcephaly. Both are small - Claire is the size of a toddler (about 10kg) and Lola a three-month-old baby (5.4kg). The girls also go through a gamut of therapies, with a physical therapist, an occupational therapist, a vision teacher and a speech and technology teacher visiting the Hartley home every week. The chance of the condition occurring in their children is 25 per cent. 198402868E. About 10 per cent have normal intelligence, some never walk or talk, while many have disabilities but are high-functioning. In 2006, Mrs Hartley had a second daughter, Lola Grace. Not all babies diagnosed with microcephaly have intellectual disabilities. All rights reserved. 2020 Bustle Digital Group. She recalled that when Claire was born, the doctor told her and her husband Scott to sign a Do Not Resuscitate (DNR) form so that when the child died, she could "just let her go". Born to Gwen and Scott Hartley, a glass blower, she had two siblings, an older brother and a younger sister. 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. Hartley writes about her family's life on a blog called The Hartley Hooligans. The result of the disorder is stunted growth, particularly in her brain and head. By registering, you agree to our T&C and Privacy Policy. When Claire Elise Hartley was born in 2001, doctors told her parents that the baby had only one year to live. To many, having a child with a birth defect called microcephaly might seem to be the end of the world. If your child has microcephaly, it’s easy to get caught up in looking after her. Their brother Cal is Superman. After having Claire, our focus definitely changed. With fears over the Zika virus causing countries like Colombia and Brazil to advise women to delay pregnancy until they get the virus under control, all of the sudden the Hartleys find themselves the object of people's growing curiosity — and mounting fears — about microcephaly, which causes babies to be born with tiny brains. They can read the article in full after signing up for a free account. "I would tell the mothers who have newly diagnosed babies that they can But a log-in is still required for our PDFs. Upregulation of MicroRNA miR-9 Is Associated with Microcephaly and Zika Virus Infection in Mice. WICHITA, Kansas – Gwen and Scott Hartley have three children. But Claire survived, even though she also suffers from dwarfism, cerebral palsy, epilepsy and scoliosis. (Courtesy of Gwen Hartley… Both Ms Hartley and her husband are believed to carry a rare gene which caused it. He works six days a week but is still very involved with caring for their children, she said. "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. Kansas Parents of 2 Girls With Microcephaly Share Joys, Struggles of Family Life. I bawled," said Mrs Gwen Hartley, 41, who is from Kansas in the United States. Meet the Hartleys. Microcephaly may be caused by problems during a woman’s pregnancy. genes are: (1) Amyloid beta A4 precursor protein-binding family A member 2 (OMIM 602712), encoding. 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 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. They know that they have unique needs from other children. Pretty much like every other family you know. Looking after yourself and your family. "When he comes home, no matter how tired he is, he immediately steps in and helps care for the girls.". Get unlimited access to all stories at $0.99/month for the first 3 months. Lola and her sister Claire were born with severe disabilities, including dwarfism and microcephaly, due to a rare genetic condition. She shares her dreams, like a recent one she had where Lola could walk. "They told me that she would not live to be one. 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. Some children with small heads have normal intelligence. The two girls require 24-hour care. 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. We have been experiencing some problems with subscriber log-ins and apologise for the inconvenience caused. The virus has since spread to more than 20 countries in Latin America. Other causes include infections like German measles and chicken pox, exposure to drugs, alcohol or toxins, and severe malnutrition. Her life is beautiful and fun, with a bit of sadness here and there. She ignored the doctor's instructions and chose not to put her daughter on a host of recommended medications. "They will find strength within them that they never knew And we were terrified of losing both of them," she told The Straits Times. 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. 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. Lola Hartley in PICU the week she died, holding her mother’s hand. Claire has microcephaly, a condition in which a baby is born with an abnormally small head and brain. 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. Kansas Parents of 2 Girls With Microcephaly Share Joys, Struggles of Family Life More Scott and Gwen Hartley have two daughters with the same … Because they're going to be just fine. Along with microcephaly, the girls have dwarfism, cerebral palsy and problems with their bones and joints. Because they make it look beautiful. The outbreak has thrown the spotlight on what it is like living with microcephaly, for both the sufferers and their caregivers. Mr Hartley, formerly a teacher, now works as a glass blower. The blog documents the Hartley's lives as they manage her and her sister's microcephaly. It was very hard to adjust to the fact that we'd be the parents of not one, but two special needs children. Intellectually, they are possibly "6-18 months", said Mrs Hartley. Both she and her older sister, Claire, have microcephaly caused by an Asparagine Synthetase Deficiency. Both were born with microcephaly, the birth defect spreading like wildfire across South America along with the Zika virus. All rights reserved. No. And help from special needs organisations also has microcephaly, the condition occurring in children... Chances of having a child with a bit of sadness here and there 's question. Stander/Sitters, walkers, scales, wheelchairs, double wheelchairs. `` also has,... Small brain and head member of the children are severely affected, too, has microcephaly spotlight on it. Talk specifically about microcephaly, it ’ s priorities shifted in those 12 months protein-binding a! 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