Help Sam for his NUSS operation and genetic testing

  • US$750.00
    raised of $100,000.00 goal goal
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2 Donors
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Hello everyone this is Sam. He is 7 yo fun loving, amazing kid who loves swimming, animals and football. When I got to my 21 weeks ultrasound, I were told the words I never want to hear.. "There is a problem with the baby.." There was a mass in the left lung, most likely CCAM, an abnormal growth of lung tissue that prevents the growth of the lungs.. Scan showed that CCAM was occupying the left lung causing the baby's heart to be pushed to the right side of it's body. My world stood still and all I could think to ask was what did I do wrong and why did this happen? I was assured that it was nothing that I did and that was there anything I could have done to prevent this. He was being monitored every 2weeks to watch for hydrops.
He was diagnosed with CCAM (Congenital Cystic Adenomatoid Malformation) The cause of this can be many things, it can occur primarily due to developmental anomalies, chromosomal anomalies or congenital malformations. He had thoraroscopy surgery when he was 1 day old and stayed in NICU for 1 month. Despite all the odds against him he survived.

Sam is underweight with scoliosis, global developmental delay and severe pectus excavatum and need a NUSS procedure.
He also have all the symptoms of a genetic disease called Loeys Dietz Syndrome, potentially life threatening.

Loeys-Dietz syndrome is characterized by enlargement of the aorta , which is the large blood vessel that distributes blood from the heart to the rest of the body. The aorta can weaken and stretch, causing a bulge in the blood vessel wall (an aneurysm ).
I am a single mother with two kids both have genetic disease. I humbly ask for your prayers as well as financial support during this trying time. I am remaining strong in my faith that I will get through this and somehow be better because of it. We just have a long bumpy road ahead.

Some of the complications he faces includes:

Spinal deformity Difficulty in breathing Blue tinge in the whites of the eyes

Breast bone grows inward
Clubfoot or flat foot

Long fingers and toes
Loose joints Easy bruising
Very soft or velvety skin
Translucent skin Hollow organs that can rupture (for example, intestine, uterus and spleen)

He needs the following
Diagnosis and treatment:

Physical exam and medical history
Angiogram
Echocardiogram
Imaging tests

CTSCAN

Genetic testing Nuss procedure

Retinal opthalmologist

Pedia Orthopedic

Gcash 09151385958 Miriam

Rcbc savings account 9011892405 Miriam Ybiernas



Organizer

  • Miriam Ybiernas

Donors

  • Guest
  • Donated on Aug 05, 2022
  • Get well soon dude

$700.00
$50.00
Aug 09

Consultations and laboratories

Update posted by Miriam Ybiernas at 10:17 pm
rrrr

Yesterday was Sam's visit to his Cardiologist and Orthopedic doctor. He was required to do 2Decho and x-rays to check his heart condition, chest haler index and scoliosis. Today he is schedule for Gene exome sequencing in UP manila. I am hoping for negative result so there will be less. . . . .

See update
0

Donors & Comments

2 donors
  • Guest
  • Donated on Aug 05, 2022
  • Get well soon dude

$700.00
$50.00

Followers

3 followers
Jacqueline Sapno
Samuel Zachary Ybiernas
Marife Diagbel

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