Max's Miracle Fund

$2,715 of $1 goal

Raised by 34 people in 46 months
Jessica Jackson Berrios  RALEIGH, NC

On November 21, 2011, after seven years of trying for a baby and three miscarriages, Maxwell Cooper Berrios came into this world.  His first breath took his parents' breath away, but their excitement was put on hold when just minutes after birth Max was diagnosed with hypospadias and an imperforate anus. These were two correctable birth defects, but they required Max to undergo surgery at less than 24 hours old. It wasn't until he began his recovery in the NICU that the doctors began noticing signs of severe and life-threatening heart and lung defects.


Max was diagnosed with pulmonary hypertension, pulmonary vein stenosis, a large atrial septum defect, as well as other congenital heart defects. Pulmonary vein stenosis (PVS), the most rare and severe of the defects, causes progressive blockages in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. With the inability to control the veins from becoming completely blocked, PVS has an exceptionally high mortality rate.  Max was originally sent to UNC Children's Hospital where the doctors, unfamiliar with this rare condition, gave him only a few months to live.


Devastated, Max's entire family mobilized to help find a hospital that would take on such a difficult case. It didn't take long for Children's Hospital of Boston to rise to the top of everyone's list. On February 13, 2012, Max was flown by air ambulance to Boston where underwent open heart surgery three days later to repair his pulmonary veins and other heart defects.


Max is now part of a cutting-edge study that uses chemotherapy drugs called Gleevac and Avistan to help slow the PVS from obstructing his veins. The goal is to slow the disease enough to give him time to grow out of it and to avoid receiving a lung transplant, which would only be a short-term solution.


On his first trip, Max spent 8 weeks in Boston and was able to come home in April. With countless doctor's appointments, medications and a feeding tube, Gina and Matt, had their hands full.  Gina had to take a leave of absence from teaching to take care of Max while Matt started a new job to help cover the mounting hospital bills.  April was Max's only month at home with his parents.  In May, Max was in and out of Duke Hospital for stomach and respiratory problems, and he was flown back to Boston in June after going into heart failure.


For the past five months, Gina has lived in Boston in a converted college dorm room for parents with children in the hospital.  Matt has had to continue working in North Carolina to pay their mortgage and medical bills as well as Gina's living expenses.  The distance has proven especially hard on the couple who have never spent more than a few days apart since they began dating at the age of thirteen. Despite the obstacles, Matt and Gina have kept their faith and never stopped fighting for their little boy.


To date, Max has undergone ten cardiac catheterizations, been intubated multiple times in the cardiac ICU, undergone countless MRIs, ECHOs, CTs, EKGs, EEGs, lung scans, bronchoscopies and other surgical procedures. BUT, with the recent announcement from Max's doctors that they have finally pieced together his complicated medical puzzle, the family's persistence seems to be paying off.


In fact, Max just celebrated his first birthday! He has proven countless times that he is not only a fighter, but he is truly a miracle! There is no date set for Max and Gina to be reunited with their family in North Carolina, but as long as they have hope, they keep pushing forward. Max has spent every holiday in the hospital, and some without both of his parents. We are hoping to help bring them together for Christmas. We value prayers the most, but even the smallest donation will help this family while they focus on their son during this difficult time. Pray that this sweet baby is on the road to recovery and will not have to endure any more pain.


"For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future." Jer. 29:11  

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Update 1
42 months ago

Thank you so much to everyone who has sent prayers and donations to Max's Miracle Fund over the past few months! The family has appreciated every little bit, and they continue to ask for prayers as Max's disease has become more aggressive and he has been listed for a double lung transplant. Placing him on the transplant list means the entire family must relocate to Portland, Maine (Matt's company's closest office to Boston). The wait for lungs could take six months, a year or longer, but at least the family will be reunited while they wait. The lung transplant comes with its own set of challenges and possible complications, but Gina and Matt's wish for their son is LIFE, and they will do whatever it takes to give him the best one possible!

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23

For more details on Max's story, daily updates and pictures, visit his facebook page at www.facebook.com/mightymax21.
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Help spread the word!
 262 total shares
LukieDukie Klav
44 months ago

Max its luka that you met at the hospital in Boston I miss you and heard you weren't doing good miss you so xoxo luka

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Jane Yarrington
46 months ago

praying for you since the day you were born you are truly a blessed gift from God

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Lauren Starnes
46 months ago

Max, we are praying for you! **HUGS**

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Sheila Gomez
46 months ago

I love you Maxi Man!

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$2,715 of $1 goal

Raised by 34 people in 46 months
Created November 24, 2012
Jessica Jackson Berrios  
EE
$50
Eddie Eveld
33 months ago
$100
ToniAnn Baker
41 months ago

I worked with you at Chesterbrook Academy in Cary, NC. You inspired me so much to become a better teacher and mother. I have been following Max story since the beginning and I will keep him in my prayers daily. "YOU CAN DO IT MAX!!!"

LP
$25
Lauren Piurkoski
42 months ago
$5
Anonymous
42 months ago
$100
Anonymous
42 months ago
LD
$100
Linda Donnellon
42 months ago

May god bless Baby Max and his Mommy and Daddy--

OA
$20
Oritsetimeyin Agbeyegbe
42 months ago
GB
$50
Gwen Barber
42 months ago

Gina, Matt..we are thinking of you constantly and keep up with Max thru your mom. My prayers are with Max and I think of him daily..

AM
$25
Angela Marrone
42 months ago

God Bless you and your family Max. Our prayers are with you.

AP
$25
Andrea Peterson
43 months ago

I found out about this on twitter - your story is so touching and I truly wish the best for your family.

LukieDukie Klav
44 months ago

Max its luka that you met at the hospital in Boston I miss you and heard you weren't doing good miss you so xoxo luka

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Jane Yarrington
46 months ago

praying for you since the day you were born you are truly a blessed gift from God

+ Read More
Lauren Starnes
46 months ago

Max, we are praying for you! **HUGS**

+ Read More
Sheila Gomez
46 months ago

I love you Maxi Man!

+ Read More
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