Testimony of Jocelyn

 

Far from the civilazación, a mother fighting to care for her daughter with OI

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Are 4 am, Godoy and Zuleika is awakened by the cries of her baby Jocelyn. He rises from bed to find that your baby has broken a bone and needs to be taken to hospital.

Unfortunately, the hospital is hours away and she must make a journey to get: have to walk for more than 35 minutes, take a water taxi and hop on a public bus to the hospital.

Zuleika have to do this journey often, and this is the situation faced by many parents of children with Osteogenesis Imperfecta in Panama.

They live east of Panama City, in a remote village in the jungle near Chepo, where Zuleika and her baby live in a hut. The hut is on top of a hill with boulders, trees and streams that make up the area surrounding rainforest. The area is no place to raise a child with brittle bones.

“Sincerely, I have to leave here”, Zuleika said. "It's tough coming and going when it fractures. If you spend fractures in the afternoon, have to go through much pain during the night and wait until the next morning, when I can take her to hospital. That's why we need a house in Panama City, but I have no means to achieve “.

Jocelyn has suffered many fractures from birth, starting with two broken legs when he was born. Today it has almost a year old and has already undergone 17 fractures, majority in his femur and arms.

Whenever Jocelyn has an appointment with the doctor, Zuleika to walk about two miles and then board a goat, a small taxi to take you to the river in Puerto Coquira for a couple of dollars. On the river, need to catch a boat to help her cross the river. Thence, take a bus that takes Chepo, another bus to Felipillo, and the last bus leaves close to the Hospital del Niño in Panama City.

The journey is exhausting and takes several hours. Zuleika Yazmin complete the trip safely in his arms.

“Sometimes I go for a couple of days”, Zuleika said. "For example, I would now, I stay there tomorrow, and return the next day. I have to go several times a month. It all depends on fractures.”

Zuleika raised in the area where they live today, which is far and away from civilization.

“I live here with my two daughters, and my dad lives here too”, Zuleika said. "Let the river to bathe, and use the stove for cooking. My two daughters and I slept in the room.

“During the rainy season, things get worse. Everything is wet and flood, the river overflows, and often when it rains I have no place to wash clothes because the river is dirty.”

Zuleika not want to leave his family behind, but he knows to raise her daughter in the village away from the hospital is not safe. She should move to Panama City to protect Jocelyn.

“I want to live there (in Panama City), but I have to live”, said. "I have a house to live, only here, and it is my father.”

Unable to get a job to afford an apartment in the city, Zuleika need help. Crystal Children Foundation Zuleika contact when a nurse Chepo directed to the foundation, and through the Office of the First Lady, will try to find a place to live.

“Very dangerous at risk of death”, Dayana Castillo said, director of the foundation. "There are rooms to rent and apartments that are not too close to the city $150 month. We are striving to get her out of here and can live in a place closer to town. "

“As a foundation, we are supporting with milk, food, clothing, and things like that. That is all the help we can give, but not enough because what is more important than milk, food and clothing is the treatment “.

With Type III OI, Jocelyn will continue to suffer fractures if you do not receive the drug pamidronate, that helps the body produce collagen, the protein that makes bones stronger. OI patients lack the capacity to produce the required amount of collagen to your bones strong, making them more susceptible to fractures.

“Their bones break easily”, Zuleika dijo. "Because there is no treatment (in Panama) for your condition, breaks easily and suffers great pain. I want to receive treatment. She will receive physical therapy and early stimulation. Le massage and review their progress to determine whether improved or not “.

For the time being, Their situation has not improved. Jocelyn is still subject to fracture at any time, and as it grows and begins to play, only increases the risk. Have to leave where you live, and go to town.

“I need help to get a house”, Zuleika dijo. "That will make it easier for me to take my daughter to the hospital and live with her in peace”.


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