Taelyn's Brain Surgery
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THE SUMMARY:
Taelyn will need a second brain surgery on the right side of her brain due to a rare brain disease called MOYAMOYA. Taelyn will be having this surgery done in Boston, Ma on January 8, 2016 by Dr. Smith, he is very familiar with this rare disease. We are in desperate need of financial support, and any help with resource information to help us get this girl a healthy brain! She deserves the chance at life!
THE STORY:
Taelyn is a courageous little 4-year-old, she is always happy, smiling and in the best moods possible, what you wouldn't know by looking at Taelyn's sweet face is that behind that smile is one heck of a fighter.
In October 2014 Taelyn was taken to the hospital for trouble breathing and eating, the ER gave her a breathing treatment and sent her home, if only it ended there. Over the course of the day, Tae became very lethargic, weak, unresponsive to communication, at one point she even "fainted" for a minute, the hospital just said it was her having issues breathing and to just "wait it out" so at home we stayed. Taelyn went to bed like she normally does around 9pm at night, she went right to sleep, around 4am she woke up screaming, nonstop, nothing soothed her, she climbed in bed with mama and went back to sleep, the next morning I woke up to Taelyn not being able to move, she wasn't vocal, she wasn't sitting, she wasn't moving but she was breathing and looking around, I rushed her straight to the hospital where we sat in the waiting room for two hours, finally getting a room, doctor after doctor examined her, they ran blood tests and came back saying she was anemic, she was free to go home, but mama knew that wasn't the case at all, I demanded more testing being done, my daughter who talked non-stop hadn't said a word, my daughter who walked all day long, wasn't moving her legs, they did a CT Scan and that’s when we got round one of bad news, Taelyn had suffered 11 strokes in her life at this point. 11 undiagnosed strokes, 11 hospital visits where anemia was the diagnosis, 11 times my daughter’s life was at risk, but it doesn't end there either, they did an MRI to show if she had any new strokes in the last 5 days, and sure enough, #12 happened. They admitted her and began every test possible. on December 1, 2014 we were told the worst of all this news, Taelyn had a rare brain disease called MOYAMOYA.
What is Moyamoya?
Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage. In children, the first symptom of Moyamoya disease is often stroke, or recurrent transient ischemic attacks (TIA, commonly referred to as “mini-strokes”), frequently accompanied by muscular weakness or paralysis affecting one side of the body, or seizures. Adults most often experience a hemorrhagic stroke due to recurring blood clots in the affected brain vessels. Individuals with this disorder may have disturbed consciousness, speech deficits (usually aphasia), sensory and cognitive impairments, involuntary movements, and vision problems.
Taelyn was able to recover from the stroke on 10/8/14, she went back to walking running talking and eating, but this came to an end.
Moyamoya is only treatable, not curable, on December 12, 2014 Taelyn underwent an 8 hour procedure on her brain called a bilateral Dural inversion, during this procedure Taelyn suffered a massive stroke, her entire right side was shut down, nothing worked. Taelyn spent 1 month in the hospital and 1 month in a physical therapy rehab center for children. It has almost been a year and my sweet girl is still fighting to learn to walk again, talk again!
In August 2015 Taelyn went for her post-op angiogram, this test would show if the surgery was successful, unfortunately the surgery wasn't successful on the right side, OU Children's made the decision to wait for another stroke to happen before surgery would be done again. how could this happen? you WANT my daughter to have another stroke before you treat what’s causing these stroke? NO WAY! If Taelyn had a right sided stroke, she would have minimal chance at ever walking again, I couldn't risk that.
Mama began seeking a second opinion, we reached out to Boston Children's Hospital where Dr. Smith and Dr. Scott had ample experience in such a rare disease. They looked at her medical history and agreed, it wasn't safe to wait for surgery! In fact, we were told that we shouldn't wait more than 8 weeks for this surgery to be done again, Putting surgery date at January 8, 2016 just two weeks before my sweet girls 5th birthday. This surgery will be unique one, as her previous surgeon messed up a big area of her brain tissue, causing it to be a danger zone, because of that, Taelyn will need multiple incisions on her right side. This is a risky surgery, but waiting for another stroke is even riskier!
We are doing everything we can to be able to financially cover this trip, Taelyn NEEDS this surgery, we NEED your help getting her there! the money will help cover gas and food for the trip, hotel accommodations, and living quarters for her family while she stays in the hospital for 9 days. This means the world to us to those willing to help with costs.
Taelyn is my baby! this surgery could mean life or death for her!
Taelyn will need a second brain surgery on the right side of her brain due to a rare brain disease called MOYAMOYA. Taelyn will be having this surgery done in Boston, Ma on January 8, 2016 by Dr. Smith, he is very familiar with this rare disease. We are in desperate need of financial support, and any help with resource information to help us get this girl a healthy brain! She deserves the chance at life!
THE STORY:
Taelyn is a courageous little 4-year-old, she is always happy, smiling and in the best moods possible, what you wouldn't know by looking at Taelyn's sweet face is that behind that smile is one heck of a fighter.
In October 2014 Taelyn was taken to the hospital for trouble breathing and eating, the ER gave her a breathing treatment and sent her home, if only it ended there. Over the course of the day, Tae became very lethargic, weak, unresponsive to communication, at one point she even "fainted" for a minute, the hospital just said it was her having issues breathing and to just "wait it out" so at home we stayed. Taelyn went to bed like she normally does around 9pm at night, she went right to sleep, around 4am she woke up screaming, nonstop, nothing soothed her, she climbed in bed with mama and went back to sleep, the next morning I woke up to Taelyn not being able to move, she wasn't vocal, she wasn't sitting, she wasn't moving but she was breathing and looking around, I rushed her straight to the hospital where we sat in the waiting room for two hours, finally getting a room, doctor after doctor examined her, they ran blood tests and came back saying she was anemic, she was free to go home, but mama knew that wasn't the case at all, I demanded more testing being done, my daughter who talked non-stop hadn't said a word, my daughter who walked all day long, wasn't moving her legs, they did a CT Scan and that’s when we got round one of bad news, Taelyn had suffered 11 strokes in her life at this point. 11 undiagnosed strokes, 11 hospital visits where anemia was the diagnosis, 11 times my daughter’s life was at risk, but it doesn't end there either, they did an MRI to show if she had any new strokes in the last 5 days, and sure enough, #12 happened. They admitted her and began every test possible. on December 1, 2014 we were told the worst of all this news, Taelyn had a rare brain disease called MOYAMOYA.
What is Moyamoya?
Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage. In children, the first symptom of Moyamoya disease is often stroke, or recurrent transient ischemic attacks (TIA, commonly referred to as “mini-strokes”), frequently accompanied by muscular weakness or paralysis affecting one side of the body, or seizures. Adults most often experience a hemorrhagic stroke due to recurring blood clots in the affected brain vessels. Individuals with this disorder may have disturbed consciousness, speech deficits (usually aphasia), sensory and cognitive impairments, involuntary movements, and vision problems.
Taelyn was able to recover from the stroke on 10/8/14, she went back to walking running talking and eating, but this came to an end.
Moyamoya is only treatable, not curable, on December 12, 2014 Taelyn underwent an 8 hour procedure on her brain called a bilateral Dural inversion, during this procedure Taelyn suffered a massive stroke, her entire right side was shut down, nothing worked. Taelyn spent 1 month in the hospital and 1 month in a physical therapy rehab center for children. It has almost been a year and my sweet girl is still fighting to learn to walk again, talk again!
In August 2015 Taelyn went for her post-op angiogram, this test would show if the surgery was successful, unfortunately the surgery wasn't successful on the right side, OU Children's made the decision to wait for another stroke to happen before surgery would be done again. how could this happen? you WANT my daughter to have another stroke before you treat what’s causing these stroke? NO WAY! If Taelyn had a right sided stroke, she would have minimal chance at ever walking again, I couldn't risk that.
Mama began seeking a second opinion, we reached out to Boston Children's Hospital where Dr. Smith and Dr. Scott had ample experience in such a rare disease. They looked at her medical history and agreed, it wasn't safe to wait for surgery! In fact, we were told that we shouldn't wait more than 8 weeks for this surgery to be done again, Putting surgery date at January 8, 2016 just two weeks before my sweet girls 5th birthday. This surgery will be unique one, as her previous surgeon messed up a big area of her brain tissue, causing it to be a danger zone, because of that, Taelyn will need multiple incisions on her right side. This is a risky surgery, but waiting for another stroke is even riskier!
We are doing everything we can to be able to financially cover this trip, Taelyn NEEDS this surgery, we NEED your help getting her there! the money will help cover gas and food for the trip, hotel accommodations, and living quarters for her family while she stays in the hospital for 9 days. This means the world to us to those willing to help with costs.
Taelyn is my baby! this surgery could mean life or death for her!
Organizer
Niki Rosario
Organizer
Oklahoma City, OK