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$1,155 of $2,500
46%
14 donations

This fundraiser ended on 09/30/10

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Mariella Jean was born with VATERS/VACTERL association. She has a tethered spinal cord, spinal lipoma, congenital scoliosis, sacral agenesis, imperforated anus, single kidney, renal reflux, and is struggling to gain weight. Help raise money for her medical expenses.

Mariella Jean was born March 24, 2010 at 1:26 pm. She was 6 pounds, 9 ounces and 21 and 1/2 inches. We knew before she was born that she had a single umbilical artery and an absent kidney, which is often associated with other malformations. The nursing staff discovered that Mara was born with an imperforate anus with a vestibular fistula. Upon discharge (less than 36 hours after birth), we headed to Children's to meet with a pediatric surgeon to discuss the next step. Since then, we have also discovered that she has a tethered spinal cord, spinal lipoma (a fatty cyst), and sacral agenesis. She has also been struggling to gain weight (failure to thrive is also related to her condition).

Our little Mariella will have rough start to her life. There are many complicated surgeries, tests and procedures ahead of her to deal with the complications of VATERS/VACTERL association. She's expected to have at least 5 surgeries before she's 6 months old, besides multiple doctors appointments and tests. She's very strong and we are confident that she will conquer all that lies before her.

Things have become especially difficult lately. Matt was laid off and I've return to work full-time. Matt had done side jobs as much as possible, and just started a new position in commercial roofing. It's not an easy job, and he's had a rough start with the weather, but he's hanging in there. Our financial situation is adding stress for both of us. I'm unable to take as much time off from work as I would like to as it would have to be unpaid leave. With all the medical appointments/procedures/tests/surgeries that Mariella will have to have this year, I will quickly burn through my PTO and inevitably use unpaid leave. We are taking many steps to secure assistance and pray that everything will work out.

We are lucky to have my mother as Mariella's caregiver while we are at work. She has been a Godsend to us! We have more struggles ahead though as we begin specialized home care for Mara. We are currently doing dilatation of her anus twice a day, specialized medication around her stoma, and will soon be placing a catheter three times a day to empty her bladder to protect her kidney. I can't even begin to describe how hard it is to do such things to your little girl! The burden that is placed on us as parents, and grandparents is tremendous, but we know it's all for Mariella's benefit.
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