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2025-06-19 18:23:00
A Young Girl’s Brave Battle
Eight-year-old Leah faces a challenging journey as she battles epilepsy/in-depth/brain/art-20546821″ title=”How your brain works – Mayo Clinic”>multiple brain tumors and related health issues,requiring constant monitoring and treatment.
- Leah’s mother is constantly anxious about her daughter’s health tests.
- The girl’s tumors are inoperable and affect her language and behavior.
- Leah struggles with hyperactivity, vision loss, and sleep apnea.
For laya’s mother, Rasa G., every sixth anniversary of her daughter’s health tests brings with it a wave of anxiety. The grim reality is that each check-up reveals the emergence of new tumors. These tumors are unfortunately located in dangerous areas of the brain, making surgery impossible. Doctors are limited to monitoring them.
According to her, because the tumors also violated the centers responsible for language and behavior, this was due to the girl’s hyperactivity.
“She’s very hard on the spot: she goes from one end to the other – she doesn’t want to stay in one place for a long time. She doesn’t even realize she’s wrong, although she’s 8 years old,” she said.
Rasa G.: “Each check-up reveals the emergence of new tumors. These tumors are unfortunately located in dangerous areas of the brain,making surgery impossible.”
Early Signs and Diagnosis
Leah’s journey began with a relatively smooth pregnancy, though initial concerns led to bed rest.Later, her early growth showed some delays. Leah experienced dizziness and vision problems, which prompted visits to various doctors.
In May 2021,the family found themselves consulting with neurologists. Magnetic resonance imaging revealed multiple brain tumors and a genetic disease. Further research confirmed Leah also had epilepsy.
Did you know? Leah was born with some health issues and later experienced developmental delays, which led to the discovery of her condition.
Eventually, due to the multiple tumors that also violated the brain centers responsible for their vision, Leah was blinded by one eye. Other eye vision also weakens the processes,unfortunately,irreversible. Other diseases, genetically inherited neurofibramatosis, can progress with time.
The studies followed one by one,and each time more diagnoses were made. Unfortunately, they are increasing.
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Battling Nighttime Fears
rasa also worries about Leah’s sleep apnea, a condition that sometimes causes Leah to stop breathing during sleep. This leads to Rasa frequently waking up at night to monitor her daughter’s breathing and track her oxygen levels with a pulse oximeter.
Sleep Apnea Alert: Leah’s sleep apnea requires constant monitoring, causing significant stress for her mother.
There are days when the heart seems to fall into the heels when you see that the child is not breathing at night. Sometimes you have to move to breathe in and sleep again.
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“There are days when the heart seems to fall into the heels, when you see that the child is not breathing at night. Sometimes you have to move to breathe air and sleep again,” her mother said.
A more advanced pulse oximeter, capable of not only monitoring oxygen saturation but also storing data for medical professionals, is a desired necessity for the family.
“It seems like a small machine, but it costs a lot. But most importantly, the child’s health,” Rasa said. The family faces significant expenses for doctor visits, studies, and vitamins.
Financial Burden: The family struggles with the high costs of medical care, including research packages and potential future studies.
“There is no need to pay for regular research, but research packages that help monitor the dynamics cost a lot. Future plans include much more expensive studies at a cost of several thousand. Maybe they will be clearer about condition and treatment? ” – Rasa was hoping.
Looking Ahead
Leah’s development requires working with various specialists, including a speech therapist.Her mother hopes to take her to the seaside and participate in dolphin therapy.
The emotional impact on Rasa is considerable, illustrated by her heartfelt account of monitoring Leah’s breathing at night. rasa’s nights are frequently disrupted, her sleep fragmented by necessary checks on her daughter’s well-being. The constant strain of this nightly routine can lead to chronic stress, and anxiety, as Rasa juggles the emotional and logistical responsibilities that Leah’s health demands. Rasa’s own needs are often put on hold, ensuring Leah receives optimal care, yet the unrelenting circumstances have resulted in symptoms of a stressful life that must be kept in check.
Finding Strength: Rasa relies on her support network and the hope for advancements in treatment to navigate the challenges.
Despite these challenges, the family remains focused on providing Leah with a high quality of life.Rasa seeks support, comfort, and advice through her family and close friends. Their shared experiences, empathy, and the collective encouragement from support groups dedicated to rare pediatric diseases further support the family. simultaneously, the family actively looks for treatment options, researching clinical trials and other therapies designed to improve Leah’s symptoms and future health.
the pursuit of specialized care, for instance, dolphins therapy, showcases the family’s proactive approach to Leah’s development. Though the therapy requires considerable planning and expense, the potential benefits in helping to improve Leah’s wellbeing underscore their dedication to explore every possible option.
The family continuously seeks emotional support from friends, family, and support groups.
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By sharing Leah’s story, Rasa hopes to not only raise awareness about pediatric brain tumors, but also advocate for increased support for affected families. Raising awareness promotes increased research by increasing the need and funding for new research and treatments. This further encourages broader public support that can have a lasting positive impact on the lives of countless children and their families who also struggle with similar conditions.
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