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Marfan Story Page 1
Marfan StorybyJoe Smart joe.smart737@gmail.comAlthough my wife, Carol, had not been able to return to her native Philippines sinceher arrival in the US in the 1970s, she did enjoy a close relationship with two of hersisters-in-law, communicating by phone, e-mail, and, occasionally, snail-mail. One of these ladies had an only child, a daughter named Precy.Precy was the first of her generation Carol and I befriended and supported in herendeavor to attain an education. Her engaging personality, good attitude, and desireto progress, coupled with her quick acquisition of English, soon endeared her to us.We learned how special she was the Christmas she was 15. My wife and I decidedthat, instead of giving each other presents, we would give money to my wife’srelatives in the Philippines. But by the time we allocated amounts to her brothers andsister and their older children, there was little left for the younger nieces andnephews. Precy’s share turned out to be only five dollars. We found out later thatshe gave her money away to another cousin who needed it more, and she did without.We heard another story from her first year in college, as a girl from the provincesalone in the big city. Her landlady had a maid, and Precy often shared her food withher. The other students asked, “Why are you being nice to her? She is only a maid!”Precy replied, “My mom was a maid. When I was born, her boss told her that wewould be allowed to live in the goat house. She often told my mom to clean the tableafter dinner, but wouldn’t let her touch the leftover food. There was ‘special’ food formaids! Now, my mom has a small store. And that former boss comes to my mom andasks for loans. I think I’ll be nice to the maid!”After Precy’s first year in college, we sent her closest cousin, Irish Jane, to stay withher and attend the near-by high school. Once we sent an email exhorting them tostudy hard and do well. I’ll never forget her stunning reply: “As for me and Irish Jane,since we were young we have worked in the heat of the sun. We know the value of this opportunity to get an education. We will not disappoint you!”Precy was diagnosed as having Marfan’s Syndrome when she was 17 years old.During her first year in nursing school, she emailed us and said she couldn’t see wellenough to read some of her textbooks, and had to ask her friends to help her study.
 
Marfan Story Page 2
We encouraged her to see an eye doctor, and he told her she had dislocated lenses.“Dislocated lenses?” I asked. I had heard of dislocated shoulders, but dislocatedlenses? In half a second, Google gave me over 200,000 results for dislocated lenses,and most all referred to Marfan’s Syndrome, a connective tissue disorder whosesufferers usually have dislocated lenses, longer-than-average arms and legs, long,tapering fingers, abnormal heart valves, and the probability of developing an enlargedaorta resulting in aortic dissection, often fatal.We had always realized Precy was much taller than her classmates and had relativelylong arms and legs, but it was not till Precy’s eye problem was diagnosed that werealized she had Marfan’s. Within a week of hearing the diagnosis of dislocatedlenses, we had become fairly knowledgeable about this condition. Most of ourinformation came from the wonderful, compassionate people of the National MarfanFoundation (NMF) whose website and phone number we found through Google.Precy, learning of all the ramifications of this condition, had quite a bit of growing upto do in a short time, and we were worried that this, loaded on top of her being ascholarship student from the provinces alone in the big city, might be overwhelming.But we were reassured when she sent us an e-mail saying, “About this MarfanSyndrome… my mom always says, ‘When you fall off a cliff, one of two things is goingto happen. Either God is going to catch you, or He’s going to teach you to fly!’”Although Precy is not defined by Marfan’s, it does affect every aspect of her life. Thegrace and courage she has exhibited while dealing with it has certainly inspired me. Ihave never met someone so young with so great a sense of purpose in life and with somuch confidence that all is according to God’s plan and that He will guide her and useher throughout her life.Precy continued her studies for another term, then had to take the next term off because she just couldn’t see to read. So, when we finally were able to go to thePhilippines in January, 2007, our first order of business was to get eye surgery for ourniece so she could resume her studies.She had two eye surgeries, one on each eye, about three weeks apart. They weresuccessful, but painful. And they were timely – Dr Miguel DeLeon, one of the mostcompassionate and skillful physicians I have ever met, found incipient retinal tears inboth eyes. A delay of only a few months might well have resulted in detached retinasand the loss of sight in both eyes. I wrote the following story a few weeks after hersurgery. It recounts one event during her recovery.
 
Marfan Story Page 3
MIDNIGHT He quietly opened the door to her crowded room. In spite of the fan, the heat of thetropics was almost overwhelming. Clumsy from lack of sleep, he maneuvered around the bodies of her visiting mother, aunts and cousins splayed across the floor till hereached her bed.Gently holding her hand and stroking her arm, he whispered, “It’s time.” Shewhimpered, not fully awakening, but knowing what was to come and reluctantly accepting both the necessity and inevitability of it.She gripped his wrist as he moved his left hand to her face and, using his thumb and middle finger, opened her recovering eye. With his right hand, he positioned the small bottle containing the medicine prescribed to control swelling over her eye and allowed one drop to fall into the pocket between the eye and the lower eyelid. She cried out,squeezing his wrist hard, and he prayed the same prayer every parent prays when they see their child in pain: “Oh God – I wish it were me and not you!” She held his wrist with both hands now, still not awake but knowing it was not yet over. She had quickly found out that the pain of the medication was worse than the pain of the operation. Every three hours, day and night.He had the second bottle of medicine ready now. The antibiotic. The one that 
really
hurt. One drop. The cry, almost a scream this time, and her whole body spasmed.Then, knowing it was over, she held his hand to her tear-stained face and rolled to her side, trapping his arm. Holding him tightly, she slipped back to sleep. He held theuncomfortable position for a minute or two, and then gently pulled his hand away and went back to his room, leaving her for another three hours.
The year after Precy’s eye surgery, we found that we could get her open-heart surgeryin Manila. We discovered this surgery was available in the Philippines because thenewspapers carried the story of the treatment for aortic dissection on the husband of the nation’s President.Precy’s surgery was successful, but there were complications during the recovery.During the treatment for the complications, her spleen was punctured and she almostdied from internal bleeding. I would like to write the story of that night, but it is stilltoo close to the surface…I’ll try to write it in another year or so.
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Joe Smart

In an effort to increase awareness of Marfan's Syndrome in the Philippines, Precy recently started a blog at http://precypinoy.blogspot.com/ J. Smart

reply11 / 11 / 2009

uploaded a new revision for this document (#2)

11 / 11 / 2009

uploaded a new revision for this document (#1)

11 / 11 / 2009
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