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Norah S.

The light at the end of the tunnel

Confession time. Wednesday is halfway over and at this point I’m just trying to make it to the weekend.

What is it about the middle of the week that just seems to drag on endlessly? The only good thing about Wednesday, besides a few choice galleries on theCHIVE, is that you can finally start to see the light at the end of the tunnel.

While most of us toil away day after day in our pursuit of the ever-elusive Friday, there are others among us that will never have the luxury of knowing what tomorrow will bring, or even if it will come at all.

Meet Norah, a tiny survivor who has fought every day of her two and a half years to get closer to that light at the end of the tunnel. For her, though, there is no roadmap. Moving forward is not as simple as flipping a calendar from Wednesday to Thursday. Norah is literally one-of-a-kind.

Born at just 3lb 12oz, Norah’s first few days were a whirlwind. Shortly after birth, she was airlifted to the New Orleans Children’s Hospital while her mother, Chrissy, recovered from her C-section. When Chrissy finally saw her daughter hooked up to dozens of monitors and tubes, the alarming symptoms were already piling up. Spontaneous brain bleeds, massive heart defects, kidney reflux, bleeding on her adrenal gland, and not being able to breathe on her own were just a few.

In all, Norah spent over 200 days of her first year in the hospital accruing a total of 6 brain and heart surgeries to save her life. Doctors were able to pinpoint a very large chromosomal duplication leading to a laundry list of diagnoses: Pierre Robin sequence, kyphosis, interrupted aortic arch Type B, hydrocephalus, hypothyroidism, multi-focal epilepsy, and the list goes on. Chrissy instinctively asked the doctors how many other children in Louisiana had Norah’s condition. There could be others out there like Norah, potential peers, playmates, and support groups. “She’s the only one,” the doctors responded. In Louisiana? “No, in the entire world”.

In total, Norah has 589 duplicated genes. According to her team of 14 specialists, the simple fact that she lives and breathes is a miracle.

It goes without saying that doctors had no idea what to expect for Norah’s future. They just knew if she made it to her first birthday things would get easier and the potential for real improvement increased dramatically.

As It turns out, Norah is a tough little fighter. She went from the sickest baby in the NICU to the smallest baby in the cardiac ICU and eventually became the little girl who blew doctors away with her resilience and heart.

At two and a half, Norah now loves playing with her sister, Lena. If Norah had it her way she would hang out with her big sis all day listening to music, playing peek-a-boo, and watching the Voice. And even though she doesn’t have a voice of her own yet, Norah has a smile that will brighten up the room.

While Norah continues to improve, her medical conditions bring their own daily challenges for both her and her family. Norah has global delays, is dependent on a ventilator 22 hours a day, is G-tube dependent and cannot sit on her own yet.

Norah also travels everywhere with a collection of equipment that her family affectionately refers to as her ‘accessories’. The life-sustaining items include her ventilator, portable suction machine, feeding supplies, trach supplies, a diaper bag, and her wheelchair. Imagine trying to get anywhere outside of the house with all of that!

Now imagine Chrissy, a single mother, trying to fit all of those accessories plus lift Norah safely into her 2008 Toyota Camry. It’s a process that goes down 4-5 times a week for Norah’s therapy sessions and doctors appointments alone. That doesn’t count the trips to some of Norah’s favorite places – the zoo and the aquarium.

If only there was a community out there that championed the underdogs like Norah. An army of misfit do-gooders that wanted to make the world at least 10% better $5, $10, and $25 at a time. A group like that could make a big difference. A group like that could move mountains or light the way through a dark tunnel…

Luckily for Norah, Chivers like you exist. We’re happy to announce that your donations to Chive Charities purchased a brand new $47,000 BraunAbility wheelchair accessible Dodge Caravan for Norah, Chrissy, and Lena.

“This is beyond anything we could have ever imagined,” Chrissy told me on the phone after she drove the van off the lot. “My heart is so deeply touched by the generosity shared by those who care for my girl and want to improve the lives of my children.”

Since the day she was born, Norah has broken down stereotypes and defied doctors expectations. Chrissy calls her a force to be reckoned with. “If they couldn’t tell me what she would do, then they also couldn’t tell me what she wouldn’t do.  And I was going to make sure she had every opportunity to show us what she COULD do.” Thanks to our amazing donors, Norah’s possibilities are wide open. Her horizons have been expanded. And we’re excited to be right there with her every ride along the way.

Will you help light the way for our next recipient? Be the beacon of hope by donating to Chive Charities RIGHT HERE.

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