My name is James DesRoches and this is my daughter, Kaylee Isabel DesRoches.  She was born February 11, 2016 at 3lbs 15oz.  Little Kaylee is one of the happiest little babies that you’ll ever meet.   When my girlfriend Marcia and I found out we were going to have a baby, our dreams had finally come true.  It had been a difficult road getting pregnant thus far but we knew we could finally relax; we were going to be parents.  We waited until the 2nd trimester to tell people, just to assure there were no problems.  At Marcia’s 20 week checkup, some of our worst fears came to light.  Our daughter had been diagnosed with a rare heart disease.  The right ventricle in her heart did not grow properly.  The blood flow is what helps the heart grow and her right side was not getting enough.  When talking to the doctors, they repeatedly leaned towards terminating the pregnancy.  We knew that wasn’t an option for us.  If the baby was going to keep fighting for life, we were going to keep letting her.  So we decided to switch hospitals and go to Boston Children’s Hospital and on February 11, 2016 Marcia gave birth to the cutest thing I’d ever laid my eyes on, Kaylee.  
     From all the prenatal ultra sounds, we went in knowing that Kaylee was going to need heart surgery at some point.  While a healthy baby’s oxygen levels run near 99 percent, Kaylee’s runs between 75-85%.  The right side of the heart is what provides the lungs with oxygen.  Inside the womb the oxygen is supplied via the umbilical cord but once born, she would have to rely on the left side of her heart working twice as hard making sure her body is getting enough oxygen in her blood.  The heart disorder Kaylee suffers from is Tricuspid Atresia along with a heart rhythm disorder.  Her heart has an extra wire inside.  If Kaylee gets too upset they fear that the electrical current can get off track forcing her heart rate to increase to a dangerous level.  That is what we fear every time Kaylee starts crying.  After 3 months of having Kaylee home with us, she caught a cold like most babies do.  Her oxygen (which we monitor multiple times a day) started dropping as low as 65%.  Long stretches at this level can cause serious brain damage so we packed up and headed to the hospital for a week long observation.  After all the standard checks the Dr. came into talk with us.  They had found an anomaly in her lung which they thought may be pneumonia.  It ended up being worse.  She was diagnosed with a congenital diaphragmatic hernia.  Part of her intestines and stomach were being pulled into her diaphragm.   It was devastating news knowing that our little angel was going to now need multiple heart surgeries and now lung surgery on top of that.  Now I’ve only been a parent for 5 months but the feeling of seeing my child in pain is like no other I have felt.  It feels like something inside of me is dying when I see Kaylee in pain. 
     Marcia and I just want what’s best for Kaylee.  Never once have we regretted in our decision to have her.  She is a fighter and is tougher then that adorable face looks.  The reality is she will need at least 1 open heart surgery, lung surgery, and possibly a heart transplant further down the road.  While insurance has been very helpful, it doesn’t take care of everything.  Some weeks we’ll have as many as 5 appointments to go to, many of them being in Boston.  Marcia is now a stay at home mom because who else would you really trust to monitor your baby’s oxygen?  Who else is trained in case it falls to a dangerous level?  The financial burden has been heavy just with the hospital visits and the time away from work.  I’ve tried going to work while Kaylee is in the hospital but the reality is I have to be with her.  I have to be there for my little girl I’m sure any parent can understand that.  Any help would be greatly appreciated; nothing is too small.  All donations will go to Kaylee and will allow us to never leave her side throughout the surgeries as well as help us with the cost of mounting medical bills.  Recovery from heart surgery can be anywhere from 1-4 weeks in the hospital.  She is currently scheduled for her first open heart surgery August 12th, 2016.  Marcia thanks you, I thank you, and most importantly; Kaylee thanks you.

Sincerely,

James DesRoches, Marcia Cordeiro, Kaylee DesRoches