496
496
9

Love & Prayers for Indigo Rose

$41,574 of $50,000 goal

Raised by 495 people in 3 months
Created May 13, 2018
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.
+ Read More
Indi had another stroke on Tuesday. Here's an update from Megan:

"We had our frequent flyer card stamped this week at the PICU. Sweet girl had another stroke on Tuesday. The good news is that it is a transient episode and we will likely go home today, with little to no residual issues and thank heavens for that. I don’t write often about her progress and how life has changed to support her medical needs. I don’t know if that’s because communicating it makes it more difficult or if just focusing on the small joys we find in her in the little everyday moments makes it easier. In any event, we’re here again amidst a month of great progress with her therapies. She works to the point of literal exhaustion and keeps smiling. If there’s a positive in all of this it’s that we now have imaging that shows definitively that the first surgery is working. How lucky we are. We’ll make it to the next. I watch her and I know she will and I am so grateful that the world gave us a tiny warrior wrapped in sequins and tiaras and super capes. Thank you for the love that you continue to shower over our family. We rely on your support more than you can imagine."
+ Read More
Indi had another stroke on Tuesday. Here's an update from Megan:

"We had our frequent flyer card stamped this week at the PICU. Sweet girl had another stroke on Tuesday. The good news is that it is a transient episode and we will likely go home today, with little to no residual issues and thank heavens for that. I don’t write often about her progress and how life has changed to support her medical needs. I don’t know if that’s because communicating it makes it more difficult or if just focusing on the small joys we find in her in the little everyday moments makes it easier. In any event, we’re here again amidst a month of great progress with her therapies. She works to the point of literal exhaustion and keeps smiling. If there’s a positive in all of this it’s that we now have imaging that shows definitively that the first surgery is working. How lucky we are. We’ll make it to the next. I watch her and I know she will and I am so grateful that the world gave us a tiny warrior wrapped in sequins and tiaras and super capes. Thank you for the love that you continue to shower over our family. We rely on your support more than you can imagine."
+ Read More
Indi had another stroke on Tuesday. Here's an update from Megan:

"We had our frequent flyer card stamped this week at the PICU. Sweet girl had another stroke on Tuesday. The good news is that it is a transient episode and we will likely go home today, with little to no residual issues and thank heavens for that. I don’t write often about her progress and how life has changed to support her medical needs. I don’t know if that’s because communicating it makes it more difficult or if just focusing on the small joys we find in her in the little everyday moments makes it easier. In any event, we’re here again amidst a month of great progress with her therapies. She works to the point of literal exhaustion and keeps smiling. If there’s a positive in all of this it’s that we now have imaging that shows definitively that the first surgery is working. How lucky we are. We’ll make it to the next. I watch her and I know she will and I am so grateful that the world gave us a tiny warrior wrapped in sequins and tiaras and super capes. Thank you for the love that you continue to shower over our family. We rely on your support more than you can imagine."
+ Read More
The past month has been busy for Indigo. She hasn’t had any strokes or seizures, which is such a blessing. She spends every weekday in therapy, going back and forth between speech, physical and occupational therapies. She is also seeing a therapist to help manage her PTSD, which was caused by the confusion and terror she experienced while hospitalized before and after her brain surgery.

While she is making progress, her speech pathologist has concluded that Indigo developed a speech processing disorder from the strokes. On her good days, she sounds almost as clear as she did before her disease manifested. On her bad days, she can’t put sentences together or pronounce consonant sounds.

Physically, she is getting strong again after having to spend a month on bedrest. She falls more often than she used to because she is still rebuilding her coordination.

Megan and Rob’s hospital bills are starting to come in, and they are worrisomely high already. The total hospital bill for this first surgery is $270,000. Their insurance is refusing to pay for her daily hospital stay and a doctor that they consider to be “out of network.” So far, Megan and Rob owe the hospital $180,000 out of their own money. They have to be in good standing with the medical center before the doctors will schedule Indigo’s second brain surgery.

So many of you have already helped so much. We appreciate all of you. Please share Indigo’s story, and please keep sending her love and prayers.

#indigostrong
+ Read More
Read a Previous Update

$41,574 of $50,000 goal

Raised by 495 people in 3 months
Created May 13, 2018
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$25
Anonymous
3 days ago
$100
Cindy Staat
4 days ago
BR
$20
Brian Roberts
19 days ago
DB
$25
Deven Bush
19 days ago
SW
$25
Shelly Waters
20 days ago
$20
Anonymous
21 days ago
BS
$100
Brittany Sale
21 days ago
$25
Terri Shelden
21 days ago
DN
$100
dianna nunes
26 days ago
SS
$25
stephen salzman
1 month ago
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.