"Loving Life To Its Fullest": Parents Of Two Girls With Microcephaly Call Them "An Absolute Blessing"

Date February 1, 2019 16:02

Learning that your baby has microcephaly can be scary. Microcephaly, a condition in which a baby’s brain and head don’t develop properly and are smaller-than-average in size, is usually seriously limiting. However, Scott and Gwen Hartley, parents-of-three from Benton, Kansas, have proven that children born with the condition can live their life to the fullest and are a blessing to their families.


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The Hartleys’ story

Gwen and Scott welcomed their first child, son Cal, in 1998. Two years later, the couple decided it was the right time to have another child.

Their second child, daughter Claire, arrived in 2001. Right after the girl was born, doctors noticed something wasn’t right with her head – it looked smaller than usual.


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Claire was diagnosed with microcephaly and host conditions that stem from it, including cerebral palsy and epilepsy. She was also diagnosed with dwarfism. Doctors told the girl’s parents it was unlikely she would live past her first birthday.


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But the tenacious little girl defied the odds and survived. Four years after welcoming Claire, Gwen and Scott decided to have another baby. They knew there was a risk, as microcephaly can be genetic (although it has other causes), but they went ahead with the pregnancy.


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When an ultrasound showed their third child had microcephaly, too, the parents were in disbelief at first. They were advised to terminate the pregnancy but refused and welcomed a beautiful girl named Lola in 2006.


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Despite the girls’ many limitations, their family set out to make their lives as colorful and full of positive experiences as possible. Gwen created a blog (which has since become widely popular) and social media pages to document their journey and raise awareness about microcephaly. The family’s story became known nation-wide, and the parents have called their daughters an an absolute blessing in numerous interviews.


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A life worth living

Sadly, Claire passed away on December 17, 2018, as a result of a complication of an infection, her family announced on social media.

Although the family didn’t have as much time with her as they wanted to have, Claire spent her time on earth “loving life to its fullest,” her mom wrote.


Claire Elise Hartley July 25, 2001 ~ December 17, 2018 We are absolutely devastated to have lost our sweet Claire last night. Her body systems shut down, possibly due to a catastrophic virus. Abby Dawn Maclaskey, our local EMS and police worked lovingly and thoroughly to try to save her life. Despite their attempts, we were not able to restart her heart. Her body had fulfilled its mission on Earth, and Claire earned her angel wings. We are completely shattered, in total disbelief, and heartbroken beyond comprehension. We know how many lives she impacted in her short 17 years, and we are so proud of her for living and loving life to its fullest. We selfishly wanted more time, as life is just not the same without her here. We will be taking a social media break until we feel we are able to sort through the magnitude of this tremendous loss. Thank you for loving our girl all these years and for never forgetting how important her precious life was. We love you all. <3 In lieu of flowers (as Lola is allergic to many flowers), memorials can be made to: Night To Shine in c/o the Tim Tebow Foundation and Make a Wish Foundation of Kansas. Share condolences at Celebration of Life Saturday, December 22, 2018 2:30 PM (Viewing starting at 1:45 PM) East Heights United Methodist Church 4407 E. Douglas Ave., Wichita, KS 67218 "I could only be grateful when I realized that I would rather have known you for a moment than never at all. I would rather endure this inexplicable pain of outliving you than to never have seen your face, spoken your name. I would rather be yours, and you be mine, regardless. Regardless of the sorrow, the sleepless nights, and the years I will walk this earth, carrying you in my heart." ~Scribbles & Crumbs

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Claire touched the lives of many, and her family will continue the mission to prove that life with microcephaly is still a life worth living!

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