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Claire and Lola HartleyGirls born with the rare disease microcephaly
Country:
 USA |
Content:
- Meet Claire and Lola Hartley: Living with Microcephaly
- A Challenging Journey
- A Journey of Hope and Resilience
- A Family of Unwavering Love
- Inspiring a Community
Meet Claire and Lola Hartley: Living with Microcephaly
Imagine having two daughters who, despite being 9 and 14 years old, can still be comfortably carried in your arms because their combined weight is only 19 kilograms and their height is only 152 centimeters. Sisters Lola and Claire, born into the American Hartley family, are quite different from their peers. Both girls were born with a rare condition called microcephaly, which is characterized by significantly smaller head and brain size as well as intellectual disability. In the case of Lola and Claire, the condition is also accompanied by dwarfism, making them look like infants. The girls are unable to speak or walk and both suffer from weak vision and daily epileptic seizures.
A Challenging Journey
When the elder girl was born, doctors told her parents that she would not survive beyond one year, but they decided to cherish every moment they had with her. The Hartley family made every effort to save their child's life. Claire, defying the doctors' predictions, has now surpassed her 14th birthday. Despite their developmental challenges, both girls bring immense joy to their family. People often forget their actual age due to their small stature: Claire is about 90 cm tall and weighs only 10 kg, while Lola is 61 cm tall and weighs 5 kg. Some people react inappropriately when they learn of the girls' real age, grimacing in surprise. Others are amazed by their size and express their admiration, saying things like, "They both fit in my hands!" Some even see a religious significance in their condition, as if the sisters were born as saints or angels. However, in reality, both girls are similar to their peers - they both enjoy rap music, watching TV, and each has her own personality. Claire is unhurried and prefers to follow her mood, while Lola is capricious and demands to be carried constantly.
A Journey of Hope and Resilience
The Hartley family's pregnancy journey did not raise any concerns until Claire was born. At that time, it was discovered that she had extremely small head and body proportions. At three months old, she was diagnosed with microcephaly. To her mother's horror, Claire not only failed to gain weight but also refused to eat. It was an immense shock for Gwen Hartley to see her child and feel helpless as the food was regurgitated after every feeding. Doctors warned the family that Claire might not survive beyond a year and that she could die from pneumonia. While some individuals with this condition can live up to the age of 40 and learn to speak and walk, in Claire's case, the Hartley family was advised to prepare for the worst. However, instead of seeking medication for their daughter, they decided to take her home, feed her with healthy food (fruits, vegetables, meat, eggs, goat milk, and supplements), and see what would happen. They felt like they had borrowed time from life, constantly expecting her to fall ill. Each day spent with her was seen as a gift.
Remarkably, Claire's body eventually stopped rejecting food, and she began to gain weight and grow stronger. At seven months old, she fell ill, causing great anxiety for Gwen. However, Claire recovered and the worries subsided. Her fourth birthday was celebrated with great joy and many guests, marking an important milestone in the family's journey. They never expected her to thrive, but she did!
A Family of Unwavering Love
When Gwen became pregnant with Lola, nobody could be sure if the baby would survive. An intrauterine examination revealed that Lola's head size was five weeks behind the normal range for her 26-week gestational age, indicating that she would be born with the same diagnosis as her older sister. Gwen Hartley made the decision not to terminate the pregnancy. "We simply provided her with the same conditions we gave Claire, and she is doing fine now." Both girls are unable to walk, speak, or care for themselves, and they experience daily seizures, although they are not painful or life-threatening to their breathing. Doctors are unsure if the sisters will ever learn to speak or walk, but Gwen once noticed with joy that Claire attempted to push her glasses away. Every small movement towards development is considered a little victory.
The parents found a way to communicate with their daughters using fluorescent toys, which helped them recognize each girl's personality traits. "They make sounds and communicate with us through eye contact, and we can see that they understand us. Besides, they smile, laugh, and recognize people. And most importantly, they know who we are." The girls are similar to their peers in their love for gangsta rap, rhythm and blues, pop music, and Eminem. For example, Claire reacts to rap music with a smile and a change in heart rate. However, both girls show their lack of interest through facial expressions when listening to children's songs and rhythms. In addition to music, the girls have become fans of sports thanks to their older brother, Cal, who is now 17 years old. According to their mother, Cal is very proud of his sisters and never expresses regret about their developmental challenges. When Gwen became pregnant with Lola and it was uncertain whether the expected child would survive, Cal said, "The most important thing for me is to get to know her, even if only briefly."
Inspiring a Community
The bond and love displayed by the Hartley family is truly remarkable. They have become well-known in their neighborhood, and the local residents consider the girls their own kind of celebrities. To truly appreciate the depth of their greatness, one can dive into Gwen's blog - the mother of two girls who fit in her arms and her heart.
