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Love & Prayers for Indigo Rose

$50,495 of $50,000 goal

Raised by 533 people in 8 months
Created May 13, 2018
Shannon Kline Phelan
on behalf of Megan Floyd
Three weeks ago, our family got the kind of phone call that everyone dreads. My three-year-old niece was being rushed to the hospital by ambulance. She had suddenly lost control of the entire right side of her body and could not stand on her own.

While my terrified sister and brother-in-law, Megan and Rob, rushed with Indigo Rose to the hospital, the rest of us paced by the phone, anxious for news. Indigo had always been healthy, so we were hopeful that nothing could be seriously wrong.

When Megan called, however, the news was bad. Indigo had had a stroke, and the doctors didn't know why. For days, she had to undergo test after test, from bloodwork to EEGs to MRIs and MRAs. She had another stroke two days later, where she was paralyzed on one side of her body again. She had to have so many tests that the doctors had to insert a PICC line that goes from the veins in her arm to her heart to make blood draws and medicine easier to administer.

After a few more days, the doctors had some answers for us. They diagnosed Indigo with Moyamoya, which is a rare, progressive cerebrovascular disorder. She is at Stage 4, whereas other children diagnosed at her age are generally Stage 1 or 2. Moyamoya causes the  arteries at the base of her brain grow narrower and narrower over time, leading to strokes, muscular weakness, seizures, and, without medical intervention, death.

The pediatric neurosurgeons at UCLA recommended bilateral revascularization surgery, which bypasses her blocked arteries,  as the only way to  save Indigo's life.

Last week, Indigo underwent the surgery. While the plan was to work on both sides of her brain, the neurosurgeons realized mid-surgery that Indigo's brain was hemorrhaging, and so she was too weak to have the operation on both sides. They spent 6 hours working on the left side of her brain, and they will have to repeat the surgery on the right side of her brain in another 6 months. She woke up from the surgery in extreme pain, and her little face was swollen and bruised.

Although the surgery was nerve-wracking for everyone, especially Megan and Rob, we thought that maybe the worst was over. It wasn't. During the night after the surgery, Indigo suffered another stroke. The following night, she started having seizures, one of which lasted more than three hours. That seizure caused Indigo to again lose all her mobility, and also took away her ability to speak.

From the time this nightmare began until today, Indigo has had 5 strokes, and 16 seizures.

She can't move or talk the way she used to,  and she is scared and bewildered by what is happening to her. She suffers from night terrors, hallucinations from her anti-seizure medications, vomiting, and overwhelming exhaustion. Her little body has been through so much. Megan and Rob cannot bear to leave her side. They are in agony watching their little one suffer as she is. Her life is hanging in the balance.

Indigo has been hospitalized in the ICU for nearly a month now.  As a result of this medical catastrophe, their medical bills are piling up. Current estimates put Indigo's medical bills in the hundreds of thousands of dollars. They need as much help as they can get to help Indigo get well enough to go home, and then to return to the ICU for the second half of her surgery. This beautiful, strong, sweet little girl has been through so much, and she is fighting so hard to live and thrive. Please help as much as you can.
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Update 18
Posted by Shannon Phelan
2 months ago
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Here's an update from Megan:

"I know everyone has been worried and sending love for our princess over the last few days. She is home now and recovering. She’s very tired but in good spirits. Out of the frying pan and into the fire I suppose, but when the universe created incurable diseases that no one could overcome, a small voice named indigo replied, “hold my Gatorade.” She’s the toughest warrior I know. And the most beautiful. And the next time we’re in a helicopter, it better be sightseeing on vacation."
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Update 17
Posted by Shannon Phelan
2 months ago
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Here's an update from Megan:

"I know everyone has been worried and sending love for our princess over the last few days. She is home now and recovering. She’s very tired but in good spirits. Out of the frying pan and into the fire I suppose, but when the universe created incurable diseases that no one could overcome, a small voice named Indigo replied, “Hold my Gatorade.” She’s the toughest warrior I know. And the most beautiful. And the next time we’re in a helicopter, it better be sightseeing on vacation."
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Update 16
Posted by Shannon Phelan
2 months ago
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Indi was airlifted to UCLA yesterday. She had 2 massive seizures. We're doing have any more details yet. Please keep praying for her!
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Update 15
Posted by Shannon Phelan
4 months ago
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Indi is okay now, but she had another transient stroke last night. She lost her speech completely for about a half hour, then she slowly started to regain it over the next several hours. It's so heartbreaking to watch her struggle and regress.

We spoke to her doctors last night, and they did not want to bring her in. At this point, exposing her another MRI, as well as the hospital and ER germs, are riskier than just caring for her at home.

We are considering an on-demand home care option for IV fluids when these things happen. That way, Indigo will get her the profusions she needs without having to go anywhere. We are waiting on the doctors to see if that's a viable option.

Please keep sending Indi good wishes.
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$50,495 of $50,000 goal

Raised by 533 people in 8 months
Created May 13, 2018
Shannon Kline Phelan
on behalf of Megan Floyd
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