Testimony of Tays

A smile always shines through the pain of OI

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Fractures, hospital visits, and constant pain is part of daily life for someone with Osteogenesis Imperfecta. A part of this, a thousand and one other disadvantages.
Tays Milena Núñez Betancourt has nine years and was suspended from school for your status.

Not their fault that constantly fracture bones, but a defective gene that prevents the bones produce collagen, which is the protein that strengthens bones and tendons.

Despite their daily struggle with OI, the school system did not hesitate to expel Tays - who loves to study mathematics and aspires to be a doctor - the school.

"It takes a long time to get to hospital,"Says Alina Nunez Yeyna, Tays's mother. "The wheelchair makes travel by bus rather complicated. It takes two to three hours to San Miguelito, and hence, is an hour and half to the hospital. "

When fractures Tays, is synonymous to many doctor visits. During the school year, these doctor visits result in absences from school to get to and from hospital. They miss school Tays is not ideal for the family, but there is no other option.

Tays is an outstanding student, but that was not enough for the administration of your school. Yeyna and Crystal Children Foundation had to fight an uphill battle for re-Tays was accepted at school.

"I had to fight for it, because this should never happen,"Says Dayana Castillo, director of the Crystal Children Foundation. "Children with Osteogenesis Imperfecta broken bones, but mentally normal people and school administration has taken the right to prosper and develop. "

Tays has had a difficult childhood. The problems started right after birth, fractured several bones when, which led to being diagnosed with OI. Today, his condition is improving. Surgery in the 2004 strengthened his legs and his spirit, which is evident in her beautiful smile.

"They put some nails in the area of ​​the femur, and fractures have stopped there,"Yeyna account. "We have not had more problems in that part of your legs, but if it is broken in the lower legs. This prevents him from walking, and so is handled in a wheelchair. "

Unlike many other children with OI, Tays public insurance to cover certain things you, but not all.

"It covers doctor visits, and certain medications when cold or when fracture, not hurt as much,"Says Yeyna. “Pero, As the insurance does not cover most of the medicines and I have enough to buy them. "

The most important medicine Tays ara not available in Panama for her. The greatest need who have children with OI in Panama is pamidronate, bones and helps to produce more collagen. Medicine has already been approved in the U.S., Europe, and other countries, but the Panamanian government has not approved.

Still confined to a wheelchair, Tays has built a great support system. She received tremendous support from family and friends, Yeyna and says the house is always filled with visits to Tays.

"My family helps me in what can,"Says Yeyan. "My mom, my cousins, and help me with my aunts when she has any Tays appointment. Call one when you have an appointment Tays, and come to help. Thank God, My family helps me a lot. "

That support system is what keeps that beautiful smile on the face of Tays and distracts from the disease.

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