Harper Foy Little American girl with Harlequin ichthyosis Country: USA

Biography of Harper Foy
Harper Foy, a little American girl born with Harlequin Ichthyosis, is one of the few people in the world with this debilitating condition. She suffers from a rare genetic disorder that causes her skin to grow ten times faster than normal, resulting in her skin shedding every four hours. Harper, from Washington, is likely the youngest person to be affected by this condition. Doctors initially believed that Ichthyosis would be fatal for Harper, but she has shown incredible resilience and fighting spirit since birth. Although the condition cannot be cured, with proper care and regular moisturization, Harper is able to maintain a relatively normal lifestyle.

A Difficult Journey
Harper faced numerous challenges even before she was born. Her abnormal development of skin tissue in the womb caused circulation problems in her hands and feet. After her birth, Harper was immediately admitted to the intensive care unit. Surgeons were able to manage the skin lesions, but had to remove the tips of four of her fingers. For a month, she fought against infections in the hospital, surprising the medical staff with her strength and resilience. Eventually, Harper was able to go home with her parents, Angie and Kevin.

Hope Amidst Uncertainty
Harper's family was told by doctors that miracles should not be expected and that they should prepare for the worst. It was a diagnosis that they had never encountered before and a condition that few in the medical world knew much about. The rarity of Harlequin Ichthyosis means that the chance of both parents carrying the abnormal genes is one in a million. As a result, Harper requires constant care from a dedicated medical team, including dieticians, ophthalmologists, and ENT specialists.

The Quest for a Special Bath
Currently, Harper's family is raising funds to purchase a special bath for her. This oxygen-enriched "Microsilk" bath, which costs $6,000, is being imported from Japan. An additional $15,000 is needed for its installation. This bath, filled with micro-bubbles that increase oxygen levels by 70% compared to regular water, will help keep Harper's skin moisturized. The family hopes to complete the fundraising by Harper's first birthday, a celebration they never thought they would have.

A Future Filled with Challenges
Despite her young age, Harper already faces numerous challenges. Her mother, Angie, worries about her daughter's future and the limitations she may face. Harper will have ongoing issues with her eyes and mobility, making contact sports impossible for her. Currently, she is learning to sit and will need physical therapy to aid her walking, which may take up to a year. Harper's sleep is also disrupted, and she often scratches herself.

A Milestone to Celebrate
Harper's upcoming first birthday on September 20, 2016, is a significant milestone for her and her family. They plan to celebrate this day with close family and friends. The family's hope is to provide Harper with a special bath, which would be a remarkable gift. Currently, Harper needs to be bathed four times a day, and she enjoys it. The "Microsilk" bath allows for precise temperature control, enabling Harper to sit in it for an extended period, providing her with comfort and relief. Although expensive, this bath would greatly benefit Harper's quality of life.

A Rare Genetic Condition
Harlequin Ichthyosis is an extremely rare genetic condition that manifests suddenly. Both parents of an affected child are carriers of the genetic disorder, and the chances of a child inheriting Ichthyosis from such a couple are one in four. Surviving children require intensive skin care, using creams and retinoid therapy. Many children also undergo physical therapy and have regular visits to doctors. Harper's condition is a constant battle, but she continues to amaze everyone with her strength and fighting spirit.