Layla’s Story
In 2021, Layla Hurt, a 12-year-old girl and talented athlete, broke her femur while playing on the playground. As her leg began to heal, she slowly lost her ability to move her foot, then her leg, followed by the loss of mobility in her neck and right arm. She experienced constant pain, and gradually was unable to walk. As the pain spread throughout her body, she was diagnosed with CRPS, Complex Regional Pain Syndrome.
Her parents, Justin (Ft. Worth firefighter) and Faith (full-time caregiver) took her to local specialists, who had no success improving her condition or relieving any of her pain. They then moved on to see out-of-state specialists, including experimental treatments, all with little success. This entire process cost hundreds of thousands of dollars out of pocket.
Meanwhile, Layla’s condition continued to deteriorate. Her limbs began to contracture (rigidity and degeneration of joints) and became excruciatingly painful and impossible to move. Eating became so agonizing that she was only able to eat a few foods in very small amounts, and her digestive system could no longer process the food she ingested without external assistance.
A good night's sleep for Layla averages an hour a night. She is also suffering from intermittent tachycardia, difficulty breathing, syncope, and muscle spasms all while being unable to speak above a whisper.
Throughout all this, her parents have done everything possible to help their daughter and watched helplessly as her health worsened.
This spring, Layla saw a new doctor at Scottish Rite hospital, who suggested that they start all over and run new tests on Layla, including genetic tests. The results came back with an additional diagnosis of Emery-Dreifuss muscular dystrophy (EDMD).
EDMD is a rare, inherited genetic disorder that affects skeletal muscles, digestion, lungs, heart, and vocal cords. After treating Layla for two years for CRPS, the Hurts found out that their daughter had also been suffering from untreated Muscular Dystrophy all along.
Layla’s Needs
Now that the Hurts finally have some direction, they need your help. They are stretched to their financial limits from years of ineffective treatments and are awaiting multiple specialists’ appointments and possible surgeries. Some urgent needs they have are money to pay the specialists and surgeons for current treatments, as well as a lift chair to help move Layla around with as little pain as possible.
This beautiful young lady, 15 years old now, finally can get the care that she needs if we can band together and help her.
If you are unable to assist financially, please consider sharing this post so that others might have the opportunity to help. The Hurts and everybody that loves them thank you for your generosity.
Ends in 53 Days
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When you become an advocate, every click and donation made via your unique advocate URL will be tallied in your Help a Hero account.
Cause Details
Medical
Layla’s Story
In 2021, Layla Hurt, a 12-year-old girl and talented athlete, broke her femur while playing on the playground. As...
Layla’s Story
In 2021, Layla Hurt, a 12-year-old girl and talented athlete, broke her femur while playing on the playground. As her leg began to heal, she slowly lost her ability to move her foot, then her leg, followed by the loss of mobility in her neck and right arm. She experienced constant pain, and gradually was unable to walk. As the pain spread throughout her body, she was diagnosed with CRPS, Complex Regional Pain Syndrome.
Her parents, Justin (Ft. Worth firefighter) and Faith (full-time caregiver) took her to local specialists, who had no success improving her condition or relieving any of her pain. They then moved on to see out-of-state specialists, including experimental treatments, all with little success. This entire process cost hundreds of thousands of dollars out of pocket.
Meanwhile, Layla’s condition continued to deteriorate. Her limbs began to contracture (rigidity and degeneration of joints) and became excruciatingly painful and impossible to move. Eating became so agonizing that she was only able to eat a few foods in very small amounts, and her digestive system could no longer process the food she ingested without external assistance.
A good night's sleep for Layla averages an hour a night. She is also suffering from intermittent tachycardia, difficulty breathing, syncope, and muscle spasms all while being unable to speak above a whisper.
Throughout all this, her parents have done everything possible to help their daughter and watched helplessly as her health worsened.
This spring, Layla saw a new doctor at Scottish Rite hospital, who suggested that they start all over and run new tests on Layla, including genetic tests. The results came back with an additional diagnosis of Emery-Dreifuss muscular dystrophy (EDMD).
EDMD is a rare, inherited genetic disorder that affects skeletal muscles, digestion, lungs, heart, and vocal cords. After treating Layla for two years for CRPS, the Hurts found out that their daughter had also been suffering from untreated Muscular Dystrophy all along.
Layla’s Needs
Now that the Hurts finally have some direction, they need your help. They are stretched to their financial limits from years of ineffective treatments and are awaiting multiple specialists’ appointments and possible surgeries. Some urgent needs they have are money to pay the specialists and surgeons for current treatments, as well as a lift chair to help move Layla around with as little pain as possible.
This beautiful young lady, 15 years old now, finally can get the care that she needs if we can band together and help her.
If you are unable to assist financially, please consider sharing this post so that others might have the opportunity to help. The Hurts and everybody that loves them thank you for your generosity.
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