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HelpBabyEvan/WalkersWarburgSyndrome

$2,680 of $10,000 goal

Raised by 53 people in 3 months
Baby Evan was baptized the night after he was born.
28314556_1520778424.5306_funddescriptionmommy and baby Evan
28314556_1520778387.8063_funddescriptionWhen Baby Evan was first born, proud mommy
28314556_1520778371.1472_funddescriptionBaby Evans first outfit and picture
28314556_1520778351.5455_funddescriptionUncle Micheal looking down at baby Evan
28314556_1520778314.6748_funddescriptionProud Grandma watching over precious baby Evan
28314556_1520778291.1339_funddescriptionProud grandpa looking down, concerned for our little angel boy
28314556_1520778250.8287_funddescriptionPapa Dave giving a loving kiss to his beautiful grandson Evan
28314556_1520778208.7707_funddescriptionMommy getting to hold precious Evan
28314556_1520778188.7611_funddescriptionDaddy holding his precious baby boy
28314556_1520778171.2854_funddescription    This sweet angel was born with the rarest form of muscle distrphy. It's called Walkers Walburg Syndrome.
     This is so rare, the doctors in WNY said they haven't seen a case of this in over 15 years. Most research says the child will not live past 1 to 3 years.
    As you can imagine, this was/is devastating news for the young parents and loved ones. 
   After he was born they did an MRI of baby Evans brain, that is when we found out the worst news. A part of his brain had not formed. He is unable to swallow and breath on his own.
That's when the doctors gave the young parents the lethal prognosis. 
Precious Evan suffers from multiple grand mal seizures. Which they are trying to keep under control.
   Although last night he was having a hard time with the seizures for a few hours.
Baby Evans parents are still clinging to the hope of one day bringing precious Evan home.

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   The doctors recently gave the young parents some hope. In that if they remove the breathing tube, and put Evan on high oxygen, he may be strong enough to breath on his own. In that case, the nurses would train Rachel and Jory on how to care properly for little Evan. In the event he makes it home. 
    Rachel and Jory have been praying to God to give Evan the strength he needs to breath on his own, so just maybe he could make it home to spend his final moments surrounded by his parents and loved ones. 
    Evan is 11 days old, he suffers from multiple grand mall seizures and he is unable to swallow or breath on his own.
    This sweet angel was born to Rachel Collier and Jory Centofanti.
The entire family is suffering during this trying time.
    Although they know they can not avoid the inevitable.  These young parents and their loved ones are keeping hope. One day they may be able to take their precious angel home. So little Evan may be able to know the love of his parents and 2 older siblings Chance (5yrs) and Adrianna (4yrs).
    We are asking for all of the support and prayers we can get from everyone. Also if anyone could donate any amount, every dollar will help go towards Evans home care if he is strong enough to go home.
   Or if the worst happens, the parents  will need help with funeral and burial costs.
   Every penny will help, and is greatly appreciated.
May God bless all of you.
   Thank you all so much for your time and support through this difficult time for our family.
   Please keep sweet baby Evan in your prayers.
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Baby Evan is breathing good on the high oxygen...
No.more breathing tube. Doing good on his own with high oxygen.
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EXHAUSTED BUT BLESSED. I want to n will message u guys and call tomorrow our close loved ones but this was one of the MOST tiring days however I owe an update to all our friends & family those praying anyone who's been supporting us. So Evan has been off Vent since (knock on wood) for going on SIX hours at ten. He is on a stronger form of assisted oxygen bc it does support him somewhat w breathing but can only give so much yet more than last option regular Oxygen. (nasal cannula). So he hopefully gets stronger w his breathing in the days to come with this smaller yet BIG step. We are soo happy to be able to see that precious face w out the vent and tape around his nose hiding it. He looks so perfect. I HELD my precious WARM baby for HOURS as did his Dad. I smelled him that baby smell kissed his face amillion times and he breaths more w stimulation his favorite form is his little bum rubbed. I heard some little baby sounds I didn't get to hear from him. All nurses n Drs were Impressed. This is a blessing we could only hope for. It comes with a whole new set of worries will he do ok through the night? etc. One step at a time though he would regular alot less assistance to come home but Praying we get there . We thank everyone for your continued prayers support and love. #LetsGetEvanhome #EvanStrong #TeamEvan
Taking the breathing tube out... and it went great!!
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I am so happy to share with everyone.... yesterday they removed baby Evans breathing tube, and they started him on high oxygen. He is taking to it nicely.
Thank you everyone for your continued support, love and prayers for little Evan and his family.
Evan still has a long way to go, but with this victory he is now one step closer to going home to be with his loving family.
Please continue to pray for precious liottle Evan. He needs all of the support he can get at this time.
May Jesus continue to watch over, and for giving Evan strength he needs to survive. In Jesus name, Amen.
Mommy (Rachel) holding her precious son Evan.
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$2,680 of $10,000 goal

Raised by 53 people in 3 months
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JB
$15
Jessica Bencomo
2 months ago
$15
Karen Chircop
2 months ago
KO
$30
Kristen Oneill
2 months ago
YK
$100
Yeslin Kimball
2 months ago
RM
$20
Rachel Martino
2 months ago
KS
$100
katelyn stumpf
2 months ago
$15
Angela Wiles
2 months ago
DS
$25
Debbie Schmidt
2 months ago
US
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Ursula Strong
2 months ago
CA
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