What can parents feel if their daughters are already 9 and 14 years old, and together they can easily fit in the mother's arms, since their total weight is 19 kilograms, and the height for two is 152 cm?
Sisters Lola and Claire, who were born into an American family Gwen and Scott Hartley, are very different from their peers. Both girls were born with a rare disease of microcephaly (occurs on average in 1 case per 6-8 thousand births), which is characterized by a significant decrease in the size of the skull and brain, as well as mental impairment.
In the case of Lola and Claire, the disease is further accompanied by dwarfism, which makes them look like babies. The girls can neither speak nor walk, both suffer not only from poor eyesight, but also daily epileptic seizures.
When the eldest of the girls was born, the doctors told her parents that she would not live to be one year old, and they decided to appreciate every moment of her presence in their lives. The Hartley family decided to do everything possible to keep the child alive. And Claire, challenging the doctors, responded to parental care - she has already crossed the line of her 14th birthday.
Despite the developmental disabilities, both girls, according to their parents, bring great joy to the family. Moreover, those around them forget their real age (one is almost 15, and the other is the tenth) due to their small stature: Claire is about 90 cm tall and weighs only 10 kg, and Lola's height and weight are 61 cm and 5 kg, respectively.
Some people react inappropriately when they find out the real age of girls, asking about age with a grimace on their face. There are those who, on the contrary, want to hold the sisters, saying something like: 'What a delight! They both fit in my hands! '.
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There are those who speak out in favor of the religious significance of what is happening, as if the sisters were born as saints or even angels.
But in fact, both girls are similar to their peers - both love rap music, both enjoy watching TV and each has its own character. Claire is leisurely, prefers to follow her mood; Lola is capricious and demands to constantly carry her in her arms.
Hartley's pregnancy history did not speak of anything that would cause concern. Only after the birth of Claire, who is now almost 15 years old, it was discovered that the girl has very small head and body sizes. At the age of three months, she was diagnosed with microcephaly.
To their horror, the couple discovered that the girl not only did not gain weight, but also refused to eat. It was a huge shock for the mother to see her baby and feel helpless, watching the food come back out after each feed.
Sisters with parents and brother
Doctors said the possibility that the girl would not live even a year and that she could die of pneumonia. Although some with a similar diagnosis live to 40, having learned to talk and walk, but, in Claire's case, the Hartley family was advised to prepare for the worst.
- We were told that if we start to select medicines for our daughter and find the right combination, then we will be able to stay with her for at least a year. Instead, we decided to take her home, feed her healthy food (fruits, vegetables, meat, eggs, goat's milk and dietary supplements) and see what happens.
It felt like we borrowed money from life, constantly expecting it to get sick. And at the same time, we perceived every day with her as a gift. - recalls Gwen Hartley.
Very soon, Claire's body stopped rejecting food, the girl began to gain weight and began to get stronger. Then she caught a cold at the age of seven months, which caused intense anticipation - Gwen decided that this was the beginning of the end. But the girl recovered and the excitement subsided.
Claire's first birthday was celebrated with great joy in the presence of a large number of guests - an event that marked an important milestone in the family's history. They just didn't hope for success, but it happened!
When Claire was 4 years old, Hartley became pregnant again, now Lola. An intrauterine study showed that Lola, at her 26-week intrauterine age, had head size 5 weeks behind the norm and that if the pregnancy was not terminated, the girl would be born with the same diagnosis as her older sister. Gwen Hartley refused to dispose of the fetus.
- We just created the same conditions for her as for Claire and she's fine now.
Both girls can neither walk, nor talk, nor serve themselves, and cannot even play. Among other things, they have daily seizures, albeit not painful or dangerous to breathe.
The doctors don't know if the sisters will ever learn to talk and walk, but Gwen once noticed, to her delight, Claire's attempt to push her glasses away. Each movement towards development is another small victory.
Parents found the opportunity to communicate with their daughters using luminescent toys for this purpose - this is how they began to recognize the character traits of each of the girls.
- They make sounds, communicate with us through their eyes, and we see that they understand us. Above all, they smile, laugh and recognize people. Most importantly, they know who we are.
Daughters are like their peers - they like gangsta rap, 'rhythm and blues', pop music and Eminem. Claire, for example, reacts to rap with a smile and a change in heart rate. At the same time, while listening to children's songs and rhythms, both Claire and Lola show with their facial expressions that neither of them is interested.
At the doctor's appointment
In addition to music, the girls have become clear fans of the sport thanks to their older brother Cal, who is now 17 years old. The latter, according to his mother, is very proud that he has sisters and never shows regret about their development.
When Gwen became pregnant with Lola and no one could be sure that the expected child would survive, Cal stated, “The most important thing for me is that I can find out who she is. Even if not for long. '
This kind of affectionate attitude towards girls is not limited to the family. They grew up in front of the whole neighborhood and the residents of the latter not only accepted the girls - they are well known and considered to be a kind of local celebrities.
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