Tough little girl (please read)

[Kitty Cat]

This is somewhat long but it is worth reading.









A word of advice: never turn your back on Sierra Sekulich. If you do, you’ll probably take a foam dart to the derriere.
The 15-year-old, who is in the hospital awaiting a heart and double lung transplant, is famous on the Pediatric Critical Care Unit at the Monroe Carell Jr. Children’s Hospital at Vanderbilt: famous for firing little plastic darts at doctors and nurses, using a whoopee cushion with impunity, being surly any time before 11 in the morning, going to bed waaaay past midnight and for keeping the staff and faculty laughing, painting fingernails and running for cover from darts—like no other patient on the unit can.
Sierra is also famous in the Division of Genetics. Her life intersected with research to solve a 20-year mystery. Sierra helped to put a new name on an old disease, and helped find treatments for it—treatments that ultimately are unable to save Sierra from primary (or idiopathic) pulmonary hypertension, commonly called PPH. (see sidebar)
“I’ve been in hospitals most of my life,” Sierra said. “It’s a proven fact that when lung pressures get as high as mine were, it’s like breathing through a coffee stir straw.”
She started life with a heart defect called Tetrology of Fallot and had a hole “the size of a dime, in a heart the size of a silver dollar.” The corrective surgeries piled on over the years.
“She really is a unique patient,” said the doctor Sierra calls her current favorite, Thomas Doyle, M.D., who holds the Carell Family Chair in Pediatric Cardiology. “She has had an extensive history of heart surgeries, but this high pressure in her lungs was different. It’s not something that can be fixed. Sierra has about 10 percent of normal heart function right now.”
“She got short of breath again in May,” Sierra’s mother Anna Sekulich said. “And from there it was quick. They increased the drug Flolan every Monday and Friday. It’s gone up 20 times since May.”
Sierra has been in room 5305 of the PCCU since August and won’t come out again until she gets her new heart and lungs. She is on powerful medications to help her failing heart pump a bit stronger. She’s on oxygen and heart monitors 24 hours a day.
Her mother says she has been fearful of the transplant until just recently, when it appears Sierra finally realized the tiredness would never go away, that her own heart and lungs would not improve. Now the teenager jokes about it. She says she’s happy to have them just “go on in and take it all out and give me a new set.”
Sometimes the jokes go away, though.

“She has talked about her funeral,” Anna says with eyes welling. “She told me a long time ago she wants a white casket, pink carnations and white lilies and her beanie dog Fetch. She wants “Tis so Sweet to Trust in Jesus” to be played. Right now it’s her faith in God that gets her through. She’s the most amazing child I’ve ever seen.”
Sierra is very close to her younger sister, 14-year-old Kanai. She worries her sister might one day fall ill too. Kanai wonders whether she might pass the gene that causes the disease on, and plans to get genetic testing—testing that was made possible by research involving her own family.
“I’d like to know now,” Kanai says, “but since I don’t show any signs of the disease, I have to wait until I’m 18 to get the gene test.”
Anna says the family had once hoped for a cure with the help of the research Sierra has been part of. Perhaps gene therapy, the family once thought, would be available in time. But now it’s not science that will save Sierra, it will be the kindness of another person deciding to donate a loved one’s organs. Anna Sekulich is living day to day waiting for Sierra’s donor.
But Sierra isn’t waiting for anything. She’s living. She is playing, listening to Christian music, passing out suckers that turn your lips and tongue black—and shooting people with plastic darts. She wrote the following passage about her faith and love of church:

The words of the songs we sing are sung automatic because that is the thing to do. But just take a moment and listen to the words. Listen to your heart, not your brain.…
…I am so amazed to think what God has done for me. We are not promised tomorrow, we are not promised another second, but we do not take time to walk with Him.
…we can talk with God, but there are many people who can’t so we should pray for everyone who may not know Him or may not be able to talk or pray because they are in a coma or near death. There is a boy named Robert, he is so sick and needs prayer and so do a lot of people here. I want everyone to have a special prayer for them.
So because we are not promised tomorrow, we need to serve God every day and do what we can while we still can spread God’s word…

Sierra Sekulich is a celebrity of science, a rambunctious teen—and a very sick girl. She is the embodiment of living in the moment. There’s not another soul on earth for whom the future is less certain. But for now, better watch your back. Sierra can put one right through your heart when she shoots you with those darts.

[DaGimp]

um...ok....?

[Kitty Cat]

Originally Posted by DaGimp

um...ok....?

Nevermind I guess it's a girl thing. I hear you all complain about all this crap and here is this girl waiting on a heart and double lung transplant. Do you see/her complaining. No she happy to be alive.

[bigun]

Most people who live day to day like this one tend to have a different out look on life than those who don't. I had a cousin who fought cancer for 30 plus years. She and her husband raised half a dozen adopted kids from just about as many contries, in fact the people in Pecos Texas called their place the little UN. She passed away last year, the last time I got to see her was at their 50th wedding aniversery(sp) she was going through another round of test and radiation treatment but the cancer had spread to her brain. She wasn't worried about her self she was wanting someone to come in and build a tree house for her grand kids. She always had a smile, a laugh, and a kind word for everyone.

[cannoncrawler]

I have congenital heart disease and this is a good read....

last year I had open heart surgury to repair leaks in my heart so I could get to wheelin' neat girl it sounds like.....

it's easy to take health for granted!!!!!!!

[FordLuver]

I stood by and watched someone I loved very much die waiting on an organ transplant that never came in time. It is one hell of a way to have to live.

I always encourage people to at least consider being an organ donor and letting family members know, sign the back of your driver's license. Ya ain't gonna be needing it, let someone else get some mileage out of your spare parts.

[ironpig70]

since she was born this way i see her not knowing any differnt. but on another note you only live once so have as much fun and live life to its fulliest

[cherokeechief79]

thats a tough kid!













i bet she still thinks wezel is as ass

[Tbam]

Originally Posted by cherokeechief79

thats a tough kid!




i bet she still thinks wezel is as ass

hahahaha