She Doesn't Deserve This

For: India Frances Brainard
Organizer: Donnie Brainard
of $50,000 goal
35% Complete
This fundraiser is closed. Thank you for your support!

The Story

My oldest daughters name is India Frances Brainard. She and her siblings are my life. 

India, born without issue, but was injured only weeks after entering this world at a
hospital; physicianserror

Now at the age of 15, my "baby girl" is profoundly disabled and primarily non-verbal. 

For those of us who interact with India daily, are blessed with beautiful conversations in which her gratitude is so amazing when the messages is understood. Tearful laughter and relief is often the norm by both India and those of us patiently listening.  

But it's only those who clean her body without hesitation. Race India to the hospital during seizures as her breathing ceases and lips turn blue while she looks up with incomprehensible panic - who feel the desperation. It's us who defend her within the public system and horribly damaged family that have selfish motives other than her well-being or mine; resulting in terrible results. And regardless of physical exhaustion or financial ruin, we aid India day in and day out so that she may enjoy every moment to the fullest.

Today, India is in pain and needs help. It's a gut-wrenchingsituation.

India does all she can to try to mitigate the hurt.  She's had me change her pants thinking it's that which is causing the "bone to bone" agony.  As India tries to find relief, she's also has me move her from wheelchair to wheelchair in the belief that it's these devices causing the torment. And when none of the these work, she holds onto me with her one good hand trembling, asking "Daddy - help, please help, owe".

This morning,  
3:00 am - Sunday December 8th, 2013.  I'm up as a result of the 5th time India has called out to me in pain in the hopes I can help her.

India has Cerebral Palsy, Seizure Disorder, Cortical Visual impairment and too many more diagnosis to waste anybodies time on now.  But I'll look all in the eye as she's in my presence and tell you that she is 
the most beautiful person and spirit to ever grace this planet that doesn't deserve what she’s enduring.

India is in dire need of help and thus the reason I'm reaching out to you.

India has dual dislocated hips, a dislocated elbow and a life threatening curvature of the spine. The cause is in part from her Cerebral Palsy and ten-fold that as a result of something that I'm still coming to terms with but not worth addressing at this point.

My child is experiencing lifeI'd not wish on anybody.
Until this day, I've tried to control the pain through Phenol procedures; nerve alcohol blocks.  All of which took place on the East Coast. Unfortunately, this is temporary but we needed to give my child time free of her debilitating hurt so that she could gain the strength and survive this inevitable surgery.

Equally important, I wanted my child to be a “kid” and experience going to school and making friends for as long as possible.A beautiful result is her "boyfriend" which was unexpected and brought me to my knees.
I sit here this morning reaching out to the world for help. As I once was wealthy and poured a fortune into my childs care as well as so many others. I’m now in a dire financial position and am humbly asking for help to ensure India receives the medical care she needs. 
We have the private and state insurance in place for the next 60 days. But we are in desperate need of co-pay and day to day living assistance leading up to the intensive surgeries and during the recovery period.
The surgery can take place at Harvard Boston Children's Hospital in the next 60 days if I can find the means for the additional costs.
I'm humbled beyond words reaching out in this way but India doesn't deserve this and there is a way to take away her day to day agony. So I'm "Daddy" asking for help.
I appreciate anything you can do from financial support to emotion support.
Here is a link to what I've written so far about India's life and what happened:
Thank you in advance for your time; it's appreciated beyond words.

Fundraiser Updates

Posted on June 5, 2014 by Donnie Brainard
India had a bad night again. It seems like every time we see a light at the end of the tunnel, it's followed by serious darkness.
She had steady pain from 10:00 pm until about 8:00 am. It wasn't the horrific screaming pain, it was just continual low level pain. We were both up most the night trying to keep her hurt under control.
It didn't help much that our nurse had terrible bedside manner, not to mention her forgetting and/or not wanting to sanitize her hands most of the times she came and went from our room. Sanitizing is mandatory for everybody coming and going from every child's room on this ward. It was just a couple days ago that India was on "limited contact" status. This "limited contact" was to protect India from being exposed to viruses because she was so weak.
India is finally sleeping now. I got her to eat some breakfast before she conked out. My little girl is very pale, more than normal. I'm feeling really frustrated. It seems like we've made very little progress since we came to University of New Mexico Children's Hospital.

Posted on May 31, 2014 by Donnie Brainard
I was asked today what it cost to be in hospitals for 115 days. This is a hard question to answer in some ways. The quick answer is "it's not what it cost, it's what it costs..."
I believe that the hospitals and associated services have billed in the range of +/- $638,965.72 (six hundred thirty eight thousand, nine hundred sixty five dollars and seventy two cents). 
Then there is the "out of pocket" costs. This would include everything insurance wont cover. This could be something as little as buying India a bowl of hot chowder when she wouldn't eat anything else, pink nail polish to make her feel pretty, cab or train fare, clothing, toiletries, over the counter medications, business items, daily living supplies, etc. After 115 days it adds up.
There is the cost of not being able to work. This cost is both monetary and emotional and its hit is felt to the core. No work means no money. No work means no security. No work means no retirement. And at times, trying to keep the lights on, a roof over my families head and food on the table can be challenging.
The trickle down from all of the above is stress that can be crippling and tears families apart. But I know I can't leave my childs side, that could be devastating for her. So my loyalty means my life and my families lives are put on hold indefinitely so that India can have a fighting chance and a sound advocate.
There are a lot of people out there who would just institutionalize their child so that they could return to work and go on with their life. I couldn't live with myself if I did that. India calls for me 10 to 20 times a night by saying "Daddy, help me please Daddy". Imagine her calling for me from an institution only to hear her voice echo off the walls and nobody respond.
So as I'm doing for India, I'd do for any of my children if needed. And I firmly believe that we will get through this dark time and someday it will be a distant memory.
That's the "costs" of being in a hospital for 115 days...

Posted on May 30, 2014 by Donnie Brainard
India has had a difficult time holding down food lately. In fact, she's hardly eaten at all. She is already underweight so this has been frightening. When we placed the GTube, my expectations were that she'd "fatten" right up and we'd move on. That hasn't been the case.
A couple days ago, one of the doctors had a talk with me. He said that there was a chance that India had something called "SMA" - Superior Mesenteric Artery Syndrome. My India has so many things with so many abbreviations that when the doctor told me this newest possible disorder, I was very calm and to be honest more focused on my little girls pain at that moment.
Later in the day, a different doctor came into the room to let me know that India needed an Upper GI and that they'd go in through her GTube; now they had my attention. The doctor went on to say that they'd need to do a series of other tests to try and figure out if she has "SMA" or not.
There is a chance that she has a simple virus but the doctors have been unable to detect it yet which isn't a good sign. I say this because if they can find a virus, they can treat it. If it's "SMA", India could be in real trouble. 
"SMA" is considered a very rare and deadly disorder. 1 out of 3 people don't survive it. And my little girl being in the condition she is, would have a hell of a time overcoming this newest obstacle.
So I'm going to keep positive, get up in the morning and do my best to make her comfortable, happy, and healthy. And if we're lucky, the abbreviation "SMA" will be eliminated from our vocabulary forever.
Photos of our day today and last night.

Posted on May 25, 2014 by Donnie Brainard
One of the reasons India had the type of surgery she did this year in Boston is that it gives her a chance to dance again.

As you can see, she hasn't lost her desire to dance...

YMCA Dance Tonight

YMCA Dance A Few Years Ago

India's Dance Compilation

Posted on May 12, 2014 by Donnie Brainard
The decision has been made to insert a GTube into India's belly. She isn't getting enough nutrition and for the most part refusing to eat.  India currently has a NGTubeto provide her nutrition but this hasn't worked the way we hoped and it's not a long term solution

The surgery will take place tomorrow and I'm scared. Not because of this procedure as it doesn't take but an hour. I'm scared because India is so fragile and the thought of another operation in less than 24 hours when she's not been able to recover from the last in January. 
But numerous doctors are telling me that it's necessary for her survival.
Normally, next week India and I would be driving up to Colorado to water the Iris and feed the Chipmunks...  This year has sucked.

Posted on May 7, 2014 by Donnie Brainard
So after my having to be in hospitals almost this entire year with India, I made the decision this past Friday to put 100% of my focus on Marion and take her to Colorado for a couple days. To a place where there is no phone, cell service, cable tv, even broadcast tv. A place we both love beyond words and a place where it was going to just be the two of us.
We had a wonderful time...
The Moment We Arrived
We Caught Sunset!

Yes, It's Heaven....


Daddy Made A Damn Good Dinner

1st Morning View

Digging For "Burners"

Marion and I are back now, we are both grateful for the one-on-one time and we are both sad because we are facing "back to life, back to reality". I'm preparing to go to the hospital for the night to care for India. I can't wait to see her and I'm dreading another night in a hospital room.

Posted on May 1, 2014 by Donnie Brainard
India and I have been in a holding pattern for 2 weeks while we wait to be flown back to Boston to get her help. India is in pain and living her life in a hospital bed, a hospital where very little is being done for her other than pumping her full of painkillers. 
But India isn't the only one suffering. The rest of my family is too. So tonight I made a nice dinner for Vikki while she was out. She returned to a nice meal complete with flowers and candles. We ate outside and had a nice evening.
I took about a 2 hour nap after dinner and awoke to Nikki grinning at me when I came into the living room. He had gotten out of bed and was playing with his cars. He was so happy that I was up, he wouldn't leave my side. 
The two of us hung out from 1:00 am to 6:00 am, it was a good time; I love my boy.

Posted on April 27, 2014 by Donnie Brainard

Posted on April 27, 2014 by Donnie Brainard
Even wearing a Spika Cast, India was still smiling.

Posted on April 27, 2014 by Donnie Brainard

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