Health

These children with microcephaly are a source of inspiration

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The Hartley family. (Left to right) Gwen holding Claire (age 14); Cal (age 17); Scott holding Lola (age 9); and their two whippets, Romeo and Cash.

The Hartley family. (Left to right) Gwen holding Claire (age 14); Cal (age 17); Scott holding Lola (age 9); and their two whippets, Romeo and Cash.

Credit:

Courtesy of the Hartleys

The rapid spread of the Zika virus in Latin America has sparked serious concerns, especially over the possible link between Zika and microcephaly.

As we've been hearing a lot lately, microcephaly is a rare condition where babies are born with unusually small heads. Rare, but not completely unheard of.

Here in the US, roughly 25,000 babies are born each year with microcephaly.

Like sisters Claire and Lola Hartley, from Kansas. Their mother, Gwen Hartley, writes a blog about her family's daily life, called The Hartley Hooligans.

After Claire was born, the doctors told Gwen and her husband Scott she would only live till she was a year old. Claire will turn 15 in July. 

"Every year I send a letter to the doctor and say, 'Hey just wanted you to know Claire is celebrating her 12th, 13th and 14th birthday. ...  And please think about it before you sell another family short."

Hartley became pregnant with Lola four years later. They were told that Lola also had microcephaly, but "we took a different path with Lola than with Claire. For Lola, we didn't do anything different. We used the birth experience more as a healing process. Whereas it was sad and tragic with Claire, it was a beautiful, wonderful, loving experience with Lola."

"These kids are stronger than anyone you can ever imagine. They want to be here. They fight daily to be with the families that love them."

Hartley writes in her blog that people shouldn't feel sorry for her family, but many tell her how sad they are for the girls.

"We want you to know that we are happy, and we love our lives!" she writes. "Our three children have changed us by being exactly who they are. Is it hard sometimes? Absolutely. Do I have down days/weeks? Damn right I do. But these sad times never last for long. I have way too much to be happy about. Every single day with our girls is a gift."

As you can tell from these photos, the Hartley family is a source of inspiration.

 

12.12.15 ~ Squad minus one. #HartleyHooligans #WestsideDwarves

A photo posted by Gwen Hartley (@gwennieh) on

 

 

#MyProtector #CashandLola 11.7.15

A photo posted by Gwen Hartley (@gwennieh) on

 

 

 

The #HartleyHooligans do Halloween 2015 hero style!

A photo posted by Gwen Hartley (@gwennieh) on

 

 

 

So this happened... New blog post up with more pictures. Link in bio! 7.4.15

A photo posted by Gwen Hartley (@gwennieh) on

 

 

Sometimes, real superheroes live in the hearts of small children fighting big battles. 5.17.15

A photo posted by Gwen Hartley (@gwennieh) on

The girls are big fans of big brother Cal, 17, whose basketball team has sort of adopted the sisters.

After introductions, each player gives a high five to the referee, the opposing team members and to their own coach, says Hartley.

"Then they each come to the stands and give fist bumps to our little girls. It still gives me goose bumps. I tear up every time." Watch a video of the basketball team giving Claire and Lola fist bumps here.

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