Callie's Battle

For: Nikki and Warren Linscott
Organizer: Jami & Susie
Callie's Battle (Nikki and Warren Linscott)
$28,315
of $40,000 goal
70% Complete
Raised by 158 donors
This fundraiser is closed. Thank you for your support!

The Story

When you bring your beautiful newborn home, you imagine wonderful things for her. You dream of the amazing young woman your daughter will become, and all the memorable life experiences she will have. You never imagine that she will spend her first first few weeks in the nicu fighting for her life. This is Nikki and Warren Linscott's reality with their newborn baby, Callie.

At a third trimester ultrasound in late August, Nikki and Warren learned of a serious complication with their pregnancy.  Their  unborn daughter, Callie, has a very rare congenital birth defect, an aneurism in the brain called a Vein of Galen aneurysmal malformations (VGAM).  VOGM is extremely rare, affecting between 1 in 100,000 to 1 in 1 million newborns, occur when veins and arteries near the center of a child’s brain form a direct connection with each other during early prenatal development, resulting in a vascular lesion called an arteriovenous malformation. 

The mortality rate for this condition used to be very high but modern techniques and treatment have made many advances and most cases are treatable. There are a couple of key elements that effect the outcome; knowing of it, the condition of the heart, the condition of the brain, and the complexity of the malformation.   The foremost expert in VGAM treatment resides in NYC, Dr. Berenstien, reviewed Callie's case and thought there was a 60-70% chance they would need to intervene soon after birth. Treatment is measured in years and always involves more than one, however a full recovery is possible.

The initial short term goal was to get past delivery and not have to have any immediate treatment.  Knowing that they had a 'war on their hands', Nikki and Warren left for NYC, leaving their 18 month daughter Reese behind to seek the best care possible for Callie.

After a week of hospitalization to prepare for the birth, Nikki underwent a c-section on September 4. Everything with the birth went smoothly and Callie seemed to be doing well. However, three days later Callie had to undergo her first embolization procedure because she was showing signs of heart failure. Dr. B. had hoped this procedure would stabilize Callie enough so that she could go home until her first big surgery in 3-6 months. Unfortunately, days later, Callie had to have another embolization because her heart and lung function started to deteriorate again.

Despite this setback, Nikki and Warren have continued to face each day with inspiring bravery. We don't know what's next in terms of Callie's treatments, but we do know that the Linscott's lives will never be the same. Nikki was unsure if she would return to the workforce after maternity, but Callie's condition has solidified her decision to stay home to care for her children full time.

Not only is Nikki still recovering from her own major surgery, but she and Warren are struggling with being apart from their adorable toddler, Reese, who may be the only person who can truly lift their spirits. There is little we can do to help the Linscotts emotionally, but maybe we can help financially.

The goal of this fundraiser is to raise money to offset the mounting medical expenses and high cost of living in NYC. As you can imagine, immediate, short-term lodging in the city is almost impossible to find. By a stroke of luck, they were able to find top notch accommodations, but it comes with a hefty price tag. They may or may not have to extend their lease beyond September, but it's a given that they'll have to return to NYC for weeks-long visits several times in the near future.

Now is the time for us to pull together and help our friends during this difficult situation so they can concentrate on their precious baby Callie. Please consider a donation.

As the organizers of this fundraiser, we thank you for your loving thoughts, prayers, and support.

Love,
Jami and Susie

Fundraiser Updates

Posted on September 24, 2012

Posted on September 24, 2012

Dear Friends,

First of all, we want to thank you for your overwhelming support and generosity. We did not expect, after only 6 days, to be at 99% of our goal. Nikki and Warren cannot express how grateful they are to have such thoughtful and caring family, friends and colleagues. Your kindness and generosity have lifted their spirits in a way that can't be described.

We wish we had good news to report, but Callie's condition has taken a turn for the worse. Just when Nikki and Warren started thinking about bringing Callie home, she suffered a moderate hemorrhage in her brain that caused seizures. Her seizures lasted for hours before the doctors could control them with anti-seizure medication. The doctors have started performing a full round of tests to determine root cause, check for any abnormal brain function, and plan the next steps. 

Nikki and Warren's hopes for coming home this week are no longer a reality. It looks like they will need to extend their time in New York into October. For this reason, we have decided to increase the goal of the fund raiser. Please spread the word and assist us in sharing Callie's story with other people and organizations who may be able to help.

Thanks again for your continued support.

Warmest regards,

Jami and Susie


Posted on September 21, 2012

Posted on September 21, 2012


A message from Warren & Nikki:

We are overwhelmed by the generosity, thoughts, prayers, and overall show of support by everyone. We are extremely touched by the wide range of supporters from our very closest friends & family to people that we have never met but were so touched by Callie’s fight with her Vein of Galen malformation that they wanted to get involved. As our family moves through this initial battle we are constantly reminded of what is important in life and that we are so very fortunate to have such a wide and strong network of supporters in our lives to lift our spirit and shower our little girl with love and prayers. We want to especially thank Susie McKinley and Jami Hoang for taking the initiative and setting up this site and giving people an outlet for their good will. 

It is hard for Nikki and I to express our gratitude for what all of you have done for us and for Callie. You have allowed us to put our focus on our getting our little girl well and for that we thank you. We both truly believe that all of the thoughts and prayers are having a positive effect on Callie and giving her the edge she needs to get through this initial phase of her struggle. She is coming closer and closer to turning the corner for coming home so that we can regroup as a family at our home in Virginia before the next round.  

Thank you for all your thoughts, prayers, and contributions.

Love,
Warren & Nikki Linscott

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