Little person, BIG belly

$14,582 of $75k goal

Raised by 115 people in 24 days
Valentino Nicolai  SILVER SPRING, MD
Matteo's story...

April 30th 2014 birth: Matteo was delivered via emergency c-section and rush to the NICU for respiratory problems and a distended stomach. GI testings results all came back normal after a 10 day stay in the NICU.

Matteo at 8 Months: back at the hospital for chronic constipation issues, a full clean out done and an endoscopy & colonscopy was done and the results came back no signs of anything major.

14 months : Back at hospital for major distension  of colon & chronic constipation, now the term Hirschsprung's disease came along which would mean no nerves in his colon to help his bowel. Biopsy was done and  results came back negative and  Hirschsprungs was ruled out.

Matteo at 2 1/2: We spent Christmas at the hospital for another clean out because enemas were no longer working to help relieve him.

January 14th, 2017:We are at the hospital, with a Result.Matteo was diagnosed with a rare case of CHRONIC INTESTINAL PSUEDO OBSTRUCTION ( a condition in which there are symptoms of blockage of the intestine without any physical blockage) He already has had 2 surgeries preformed on him, leaving him with a feeding tube and stoma. Although things are still not moving along...


Please pray for my little person, and his big belly.

Thank you all, for reading our story.
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Update 6
Posted by Maria Macalinao
1 day ago
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It has been a long month and a half. Matteo walked out a happy child but with a Broviac, Ileostomy,gastronomy tube, and an NJ tube in his nose for feeding. We went through lots of training to care for him. Our life has changed and it will be different from now on. The doctors still don't have an answer to this rare case and only maintenance will help Matteo for now. We weren't ready for this and we have come to accept it. We appreciate all of the support and prayers that came our way. We made it home but it is just the beginning. We now have to deal with all the home care and maintenance that Matteo will need. His TPN(total parenteral nutrition/IV)is not cheap and that's just one thing. We appreciate the support and please keep spreading his story. It means a lot of us.
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Update 5
Posted by Maria Macalinao
5 days ago
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This weekend Matteo started something called ORS-Oral Rehydration Salts as his only liquid by mouth diet. His stomach failed him and didn't take the ORS very well. He actually got more dehydrated instead of the opposite. This means that he will not be able to tolerate regular food anytime soon. Thanks for all the prayers and support!
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Update 4
Posted by Maria Macalinao
10 days ago
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We talked to the doctor earlier this week and of course the answers to our questions weren't answered. They don't know how pseudo obstruction happens or how to fix it. They don't know how he will do long term because it's a rare case. It's hard not knowing answers. One day he is fine and then the next day who knows. It's so hard as a parent to see your child so helpless. Today he got a BROVIAC on his chest to replace his PICC line which are both central catheters. It is for long term IV nutrition and supposed to be safer than the PICC line. It's always hard to see him go down for anesthesia. Our little man is trying to stay strong.
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Update 3
Posted by Maria Macalinao
12 days ago
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The update for today is a change of picture, this is what I see every morning and the other hundreds of parents with a sick child. I always come straight from work at nite to be with my beautiful son and spend the mornings with him. We play around a lot we goof around we watch frozen about a million times. We are here at the hospital trying to make the best of it, with doctors and nurses coming in and out the room every hour. At night I pray but I pray hard to god to heal my son. For hope of a normal life. Tomorrow will mark a month here at children's hospital, talking to doctors today, looks like maybe another 3 weeks. Matteo is doing a lot better, his taking feeds through tpn and nj tube, but slow process. Until he can take a good amount feed and training for Maria and I of the medical procedure we have to do at home, then they will send us home. But for now Matteo and I will watch frozen another million times.


Thank you everyone for the love and prays
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$14,582 of $75k goal

Raised by 115 people in 24 days
Created February 2, 2017
$50
Wilson Murillo
18 hours ago
LE
$100
Litzy and Edgar
20 hours ago
DM
$100
Danielle Milton
1 day ago

Godmommy loves you!! I am so glad you are finally out of the hospital. Keep fighting little man.

$100
Anonymous
1 day ago
NA
$1,000
Nail Al-Jubeir
2 days ago
RG
$100
Rebecca Goldberg
3 days ago
$200
Allison Logie
3 days ago
SB
$100
Shannon Burkhart
3 days ago

Our hearts ache that you all going through this. We send all our love to the four of you and a huge hug to Matteo. XO, Shannon

MA
$100
Madeleine Avanzado
4 days ago
$250
Anonymous
4 days ago
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