Rainbow Families Foundation Newsletter - April 2004

April 2004

I have been spending a lot of time with Anny. She is very comfortable with me. However, if I bring someone to see her she clams up and is very shy and keeps her back towards us. I ask her if she is ok and she says she has shame and that she doesn't want anybody to see her, which is very understandable. She was this way the first time I met her too. She seems very content and happy when we are alone but then when I want to leave she gets very quiet and seems to want to cry, not wanting me to leave. Last Friday night it was raining very hard and I wanted to leave but she insisted that I spend the night and sleep with her. I was trying hard to get back and go to the internet café. When I arrived it was closed because of the heavy rains and no electricity. I felt bad to leave her and even worse after the internet was closed. Anny can hold the phone with her left hand (though she lost her pinky finger) but not her right hand. It is too deformed. She asks me to dial up her friends and then asks me to talk to them. She wants everyone to know she has an American friend. She's so sweet. Her grandmother made sweet rice with whole cow's milk, raisins and whole cloves. It was delicious. She told me to call in advance before I come and she will make more since I enjoyed it so much. I received donations of suitcases full of clothes so I will be able to give Anny and Jandin the empty suitcases for their travel to Boston. Somebody from Spain sent to Anny $35 via regular postal mail. When the envelope arrived it was empty. I was surprised that someone would do that. Three plastic surgeons, nurses and a social worker are in Santo Domingo from Shriner's Hospitals. We have to go next week for evaluation to determine how much time Anny will need to be in the U.S. However, Dr. Sheridan told me she will need years and years of plastic surgery. They are performing minor surgeries on other patients and reviewing potential cases. Corrina told me that another team of doctors are here from the U.S. They are going from village to village conducting checkups. Antonia is doing fine. I think I may have found a sponsor to buy her daily medication. I need to email the name of the medications she is taking. We'll see how it works out. In the world news: Many Dominicans are watching the news regarding the terrorist bombing in Madrid since they have many family members who live there. Sad so many lives were lost. Sounds like a suspect has been identified in the shootings in Columbus, thank goodness. I am disgusted to hear about the man who killed 9 of his family members in Fresno, CA. How sick! Anny's visit with the doctors went quite well. I was a little set back by Dr. Donalon's frankness, however necessary. Luckily he did not speak Spanish so Anny and Jandin did not understand him and a Dominican medical student was able to translate with a little more compassion. First, he said Anny needs to see an ophthalmologist right away and have the cataracts removed. If they are not removed she could develop cortical (not sure of the spelling) depression in the eyes, which could cause brain damage. This is contrary to what Jacobo was told by his doctor. The ophthalmologist told him that his cataract could not be removed until it finished growing. I was also speaking to a lady from Canada and she confirmed that this is not true anymore, that the doctors can perform the laser surgery right away. Second, Dr. Donalon performed some strength tests on Anny's arms and legs. She has regained some strength, wherein the nerve damage has relaxed (so to speak, my words) a bit with the time that has passed. He wants her to start physical therapy immediately and get her out of the bed. There is a rehabilitation center and I have to call again Monday morning to get an appointment for Monday afternoon or Tuesday. The physical therapist takes consultation appointments only Mondays and Tuesdays. The cost is based on the family's income. I tried calling Dr. Reyes, Anny's plastic surgeon, to see if he will write a letter on Anny's behalf to explain the critical need and the family's financial situation but was unable to reach him. I will try again today. Thirdly, Dr. Donalon wants her to begin psychological therapy as soon as possible. Like I said, he wants her out of the bed, and try to start a more normal life. He said staying in the dark room and in the bed all the time is holding her back. I realize he is right but it is easy for him to make recommendations, not feeling the same emotions that this family must endure every single day. Anny and Jandin have a lot of shame and don't like the people staring and talking. It seems each time we take her out the word spreads like wildfire. People start running to us and watching in disbelief. When pushing her in the wheelchair at the hospital in Santiago and in Santo Domingo, the people are so rude to stare and speak to their friends. Anny cannot see but she can hear what the people say. Once we get settled Jandin starts to cry. Also, Dr. Donalon does not understand the housing setup and the environment, making it difficult for her to get out of bed. I am not making excuses but simply explaining the situation. Anny's bedroom is only big enough for her double size bed with just enough room to walk on each side - making it very difficult to lift her up and carry her out of the house and into a car. Anny's father is very skinny but his determination gives him the strength to carry her. One entrance door to her room is through the kitchen, which is very small, and the sidewalk is broken and jagged, making it difficult to walk without nearly stumbling. The other entrance door from her room goes through the Jandin's little shop where she sells fabric, thread, buttons, and odds and ends. She has a sewing machine set up in front of the door and there is about a 20” space to pass through. Dr. Donalon explained that Anny will never be normal again, which I knew. A few people have talked to Anny and Jandin about surgeries that their family members have had and how they were normal again. Anny's case is severe and they are only giving them false hope in an attempt to make them feel good and give them something to look forward to. Dr. Donalon explained that the team of doctors at Shriners are good but they are not magicians. Dr. Donalon is calling her case “acute” and has given priority to sending her to US right away. He ordered the social worker to process the application for the American VISA immediately. He wants her to come for one week so the entire team can evaluate her condition and set priorities. The group from Shriners is going on to Puerto Rico and will return to the US this week. The administrator with the group said she did not want to make any exact promises as to when Anny could come but will be in touch by email after they sort out administrative details. When we went to Santiago to sleep in the hospital before our trip to Santo Domingo, a little boy about six years old named Jose Luis was in the burn unit also waiting to go to the capital with us. Nearly his entire back was scarred as though a gopher had tunneled under his skin, raising it about two inches high and two inches wide. I was told that he was scalded with water. I imagine that a pan of water was on the stove and he bumped it and scalded himself. He walked hunched as if this was a heavy weight on his back. I tried to sleep in a chair next to his bed. He was up all night digging at his skin and crying out, “me come” “mami, papi, me come” (it's eating me, mommy, daddy, it's eating me) in Spanish. His father brought him there in the public transportation from Gaspar Hernandez, a community about one hour east of Monte Llano. Apparently the father forgot the overnight bag in the public transportation and left Jose Luis alone at the hospital to find his bag. Jandin and I walked to buy dinner for Anny and us. When we returned I asked Jose Luis if he had dinner and he said he had not eaten all day. I shared my dinner with him. By the way he ate I am sure he did not eat all day. Jose Luis did not know his age but told me he had a baby sister and four older siblings at home, the reason his mother was not with him. The father returned at 6AM as we were getting ready to leave the hospital. He was a very slight, shy looking man. I have spent a lot of quiet time with Anny, teaching her words and sentences in English and she teaching me in Spanish. We have a good time together. I have also spent a lot of quiet time with Jandin. We have talked about the accident and the efforts and expenses to keep Anny alive. She told me that when her aunt passed away she left her a piece of property in Boca Nueva near Monte Llano. She said it was 629 square meters on the beach. The day after Anny's accident a man came to her and asked to buy the property. In desperation she sold it for 125,000 pesos. Incredible! The family has incurred a lot of debt, paying what they can if she is able to sell things in her store. What is left they are able to buy food. Lucas, the grandfather, receives a monthly pension of 4,911 pesos. This check is automatically turned over to one of the creditors until the loan is paid in full. I was introduced to a Dominican attorney who speaks fluent English. One of his clients owns a casino in Puerto Plata and he has offered to introduce me to them to ask for a donation. Wish me luck!