An angel in the book of

life wrote down our baby's

birth and whispered as she closed

the book "Too beautiful for Earth"

Author Unknown.

 

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Our Story

 

On March 18th of 2004 we were blessed with the birth of our first child, Brendan Brian. From day one, even though Brendan had acid reflux, and was always irritable, he brought us so much happiness.  His beautiful blue eyes would light up the room, especially when one of us would come home from a long day at work.  In November of that year we bought a house and were excited to expand our family like is the dream of so many people.  On December 1st we moved into our home, and our dream suddenly became a nightmare. Late that night, Brendan had become completely inconsolable. Our pediatricians thought it might be a good idea to take him to Winthrop hospital to get checked out.  With no fever, or any signs of infection, doctors were discharging us when Brendan started to have seizures.  Brendan was taken to the PICU (Pediatric Intensive Care Unit) and administered every anti-convulsant with no avail.  After being placed in a Pentobarbital coma for seven days, we had Brendan transferred to NYU hospital in Manhattan. Doctors there decided to perform a three part surgery to remove the area of the brain they believed was causing the seizures. Brendan did great through the surgeries and it had seemed that the seizures had stopped.  Small twitches began on Brendanís other side just a few days later.  After going through a surgery to fix his reflux, Brendanís health began to rapidly deteriorate.  He went into septic shock at home in February, and on March 14th, 2005, we decided to take Brendan off life support. He passed away in our arms just 4 days short of his 1st birthday.   Doctors did not know what happened to Brendan and was never diagnosed.  We knew that a long road of heartache was ahead of us, until we discovered in April that we were expecting.

 

          Our second son Tyler was born in November of 2005.  He immediately changed our outlooks and brought incredible happiness to our life; which had just been overwhelmed with heartache.  Although a normal reaction from any parent is to worry about their babiesí health, we knew that Tyler was going to be okay.  I guess itís a parentís intuition and sure enough we were right.  Tyler was a healthy baby and was truly a gift from above.

 

          After consulting with genetic doctors we were given the green light, once again, to proceed on expanding our family. On September 12th 2007, Liam Patrick came into our lives.  Born a healthy and happy boy, Liam would light up our days every time he smiled.  On the May afternoon that we took Liam to get his Christening pictures taken, he woke from a nap, and began to have seizures.  We could not believe that this was happening again. Why us? We rushed him to Winthrop hospital, where anti-convulsants did not work, and it seemed that everything would be the same as Brendanís illness.  We were flown to The Childrenís Hospital of Philadelphia, where the genetic and neurology departments determined that Liam was suffering from Alpersí disease and was terminal. They told us that Liam would probably not make it to his first birthday.

 

Our only course of action would be to make Liam as comfortable as possible and let the disease run its course.  We decided to come home after 2 Ĺ months, and threw a big Welcome Home/Christening party.  Two months later we had another big celebration for Liamís First Birthday!  Through the efforts of the staffs at both hospitals we were able to celebrate Liamís birthday, something we couldnít do with Brendan.  What an incredible achievement that was!  Because of Liam, Brendanís stem cells were tested, and now has a diagnosis of Alpersí Disease.  Liam passed peacefully in our arms on September 25, 2008.  We will forever remember the strength and courage in both of them.  Even though they were small, the fight in them was tremendous.  They made us so proud.

 

Most recently, we were blessed to welcome our very healthy twins, Dylan and Gabriella.  We just celebrated their 1st birthday on November 10, 2010.  They were conceived through PGD (pre-implantation for genetic diagnosis) & IVF.  Through this procedure we knew that our babies would be healthy and not have Alpers.  Our son, Tyler is now a very happy, healthy 5 year old, who is very busy watching over his little brother & sister.  The joy and love that they bring to us each and every day, is what is helping us mend our broken hearts.  They shift our focus on to happier days.  They are our rock!

 

Our Foundation was established so that we can help families, both financially & emotionally, that have children with special medical needs.  We understand how difficult it is and hope that we can ease the pain that a family with a sick child experiences.  We are also determined to raise awareness about this absolutely devastating disease and try to get funding for much needed research.

 

Our family has had so much support from family, friends, and people who did not even know us, that we feel it is our turn to give back and keep the names of our two little angels alive forever.

 

 

 

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