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Kyah's Heart Fund

$5,170raised of $15,000 goal
34%

Organizer: DeSimone Beneficiary: Danielle DeSimone

Updated January 2014 Kyah is 9 months out from transplant, her heart is doing great so far and lungs are also improving (Thank God) but there are still many challenges/adjustments that we face daily

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Fundraiser Details

Kyah DeSimone is a 13-year-old girl who suddenly went into heart failure this past Columbus Day weekend without any warning and has been hospitalized at Children's Hospital Boston ever since. She has a condition called Dialated Cardiomyopathy and has been approved for a heart transplant. Additionally, she recently learned that she has a rare, restrictive lung disease on top of her heart disease, which might also require a lung transplant.

Four weeks ago, the doctors implanted a special mechanical heart as a bridge to transplantation because her heart stopped beating on its own. If they hadn't operated on Monday, November 12th, she would have died. The Doctors were amazed that Kyah managed not only to make it through the weekend, but also that she was able to receive the anesthesia without suffering a heart attack on the table. What should have been an 8-10 hour surgery took only 3 hours. It was truly a miracle! 

Her mom is a single mother of two and has had to quit her job, as well as withdraw from nursing school, where she would have been graduating in May. Kyah's 6-year-old brother has also had numerous medical problems from birth and was hospitalized for an entire year after he was born. He too has been in and out of the hospital since then, but now that he is a little older and a lot healthier, Danielle thought it was all behind them until her oldest daughter was diagnosed with this serious illness.

They are currently living on Cape Cod and she travels back and forth between children, as she is trying to maintain normalcy for her son who is in the 1st grade.

As of now, it is unclear how much longer Kyah will be in the hospital, but once she does go home, things will have to change dramatically. Due to the sensitivity of her lungs and heart, Danielle will have to maintain an extremely clean environment. It will be very costly to purchase the equipment needed, pay for the electricity to keep them running day and night, as well as purchase the special cleaning products she will need to use. They will also have to continue commuting back and forth to Children's for multiple follow-up appointments. 

We are asking for people to donate to this family in GREAT need due to all the expenses of gas, food, household bills, parking etc.
Thank you and God bless!!!
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Updates

Updates

05/09/2013
by DeSimone
Good Afternoon,

Jus another quick update...On April 22nd (Kyahs 14th Birthday) she was able to get discharged from hospital with an escort by the Yarmouth Police Department, it was the best an amazing b-day present anyone could ask for!!! There was a small group of friends and family waiting for her outside to welcome her home and we all enjoyed eating chinese food and a delicious Cheesecake from Cheesecake factory generously given to us by Brenda from Prova restraunt.
Thank you everyone for your support and prayers she will be continually going for check ups about 2xs a week and biopsies a couple times a month and so far she has had GREAT reports on all her tests..Thank God!!!
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04/08/2013
by DeSimone
Hello again, 
As most of you know Kyah received her NEW Heart on Easter weekend (March 30th)...She is doing an amazing job recovering so quickly but w/ tht said she is also having sum very minor setbacks so please keep her in prayer that she will push thru these little bumps in the road!!!!
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02/20/2013
by DeSimone
Hello everyone,

I have to appologize for taking so long to update on Kyah's progress, it has been a long and crazy rollercoaster ride and things are finally slowing down just a bit!!!
Kyah was discharged from the hospital as of Jan. 11th and has been home ever since. She is doing very well physically and continuing to gain her weight back.  She is very much loving being home w/ her family and having her friends around. We do have appt's at CHB 2-3 xs a week and have to check in w/ Doctors everyday. She was also provided w/ nursing care daily due to the fact she can not be left alone because of her Heart ware machine and needs constant assessments. Her Doctors now feel Kyah is ready to start going back to school a couple days out of the week so last week they came to her school to teach the staff and some of her classmates about Kyahs condition and the heart pump she has to have until transplant. They also brought along the CHB camera crew to film her back in school and also interviewed us at home to eventually put her story on CHB's website and also ABC news online. Once I have those links I will post them for everyone to see!!!

Thank you for your continued prayers and support for our family..God bless!!!
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12/16/2012
by DeSimone
Thank You EVERYONE for your GENEROUS donations thus far...Its amazing how quickly people have responded!!! Kyah has currently been put back in ICU for the night in hopes to return to the floor tomorrow and my son has been confirmed to have the Flu but is stable at home being cared for between my mom and aunt (Thank GOD for them)....We are wishing everyone a happy healthy Christmas and News Years...God Bless!!!
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