Editor's note: Following this story, Katie Wright will be updating the community on Ellie's progress on her blog, Loving Little Ellie, which will be posted on Gig Harbor Patch. .
Update: As of Feb. 24, the Wrights have met their fundraising goal, and any additional donations will go in Ellie's Honor to SWAN (Syndromes Without A Name) Non-Profit Organization to pay for other families needing the whole genome sequencing test.
The family released the following statement on its Facebook page.
"We are so very grateful for all of the donations we received by check and online...Now that we have been so blessed, it is my personal goal to make this a reality for another family. Thank you again for everyone's love and support!!!"
A Gig Harbor couple is on a mission to find answers for their 10-month-old baby, Ellie, who seems to be one step ahead of science.
In April 2011, Katie Wright delivered Ellie in a water birth at her home two weeks past her due date. But Wright, who was already a mother of two, knew something was different even before the baby was born.
"Something just didn't feel right inside me," she said.
When Ellie was finally born, she wasn't breathing. Wright said the infant didn't look in distress or wasn't purple or blue, and she just looked as if she was sleeping. After her midwife administered some oxygen, Ellie was able to breathe on her own.
However, when Wright first held her baby, she thought something was off. Unlike her two kids, Jessica, 6, and Mathew, 2, Ellie's eyes were significantly smaller. She also noticed the fat around her chin and jaw, which made her look as if she didn't have a neck.
"She was also small for being as late as she was," Wright added. Even almost a year after her birth, Ellie can easily pass as a few-month-old baby. Wright also had difficulty nursing Ellie, and it took six months before the infant caught on with the breastfeeding process.
Despite the challenges, Wright said she's glad she went through with the home birth.
"I believe that if I had her in the hospital, and she wasn't breathing, they would have taken her away, they would have wanted to observe her and run some tests and that would have really hurt the bonding process between the mother and the baby. If they'd given her formula, I don't know if I'd ever been able to nurse her," she said.
At Ellie's one-week visit, the midwife sat down next to Wright and shared her concerns that something was "chromosomally wrong" with the baby.
After meeting with several doctors and going through countless exams, they were able to rule out Down, Turner and Rett syndromes. But none of the doctors could figure out what was wrong with the couple's daughter.
Other than an MRI that showed delayed myelination--a delayed response--in the brain, the tests all came back clean. However, without an actual diagnosis, the Wrights and their doctors were still unsatisfied.
"I saw someone else at the park with a little baby who was younger than Ellie, who was smiling and doing everything, and I thought, 'Why isn't my baby doing this?'" Wright said. "If I hold her up, she won't look at me and smile. She'll look at a brick wall or the ceiling and smile and laugh."
While their family members voiced doubts, Katie and her husband, Brad, were determined to keep fighting for Ellie.
Wright said she felt isolated as a mother of a child who has an unknown syndrome and was not able to relate to other parents who had children with Autism or Down syndrome. She eventually discovered Syndromes Without A Name USA (SWAN), which is a nonprofit online support group for parents whose kids are living with a syndrome without a name, and started a blog.
"I'm not going to give up--ever. I'm never going to give up until I find answers, and even then, I'm never going to give up trying to find answers for other people's children,” she said. “Living with an unknown syndrome is so fearful because you have no idea what is going on, and you have no idea how to fix it and you have no idea who to turn to.”
The Wrights have set up a website, Angels for Ellie, to raise money for a whole-genome sequencing procedure in California, which is said to have up to 90 percent chance of finding a diagnosis, according to their doctors. The sequencing test reviews 3 billion pairs of the parents' and the baby's DNA. While Ellie's doctor visits and exams have been covered through insurance so far, Wright said they will have to foot the bill for the $16,000 testing.
The couple is also planning to host a pizza party with a silent auction at , which has agreed to donate the facility for the occasion. Wright said her family has been grateful for the overwhelming support from the community.
"I'm so grateful that I live in this amazing town," she said "There's no donation too small because it brings us one step closer to possible answers."
So far, they have raised more than $5,500. Any additional money that's raised from the fundraiser will benefit other families that are going through similar situations and need the testing, Wright said.
"If Ellie is the one to be clinically diagnosed with XYZ syndrome, this will lay the foundation so that other people don't have to go through this."
If you would like to donate to Angels for Ellie, go to http://www.giveforward.com/angelsforellie. You can also "Like" their page on Facebook.
Fundraising Event to Benefit Angels for Ellie:
When: 11 a.m. to 1 p.m. on Sunday, April 1
Where: , 4835 Borgen Blvd.
What: Play, pizza and silent auction
Cost: $30 per family up to 4 ($5 per additional person), cash or check at the door