Annabelle Eve

$40,717 of $55,000 goal

Raised by 299 people in 13 months
Created December 27, 2017
Sweet little Annabelle was born a baby sister on August, 18, 2017. A week later, during routine examination, her doctor heard a murmur, and we discovered she had a common heart defect that we thought would be manageable. However after a series of tests we learned that she had another, uncommon, very serious defect, that suddenly made her condition more severe.

Baby Annabelle has a complicated little heart. She had a significant VSD (Ventricular Septal Defect) combined with a rare and difficult to manage condition called Pulmonary Vein Stenosis (PVS). This means there is an obstruction in the blood vessels that bring oxygen-rich blood from the lungs back to her heart. While many hospitals in the United States can repair a VSD, Boston Children’s Hospital is one of the only ones that has a formal program for the new, and not well understood, surgery and treatments for PVS that Annabelle will have to undergo to combat this otherwise fatal condition.

On December 10th 2017, Annabelle and her parents, Nikki and Greg, flew from their home in Fort Myers, FL to Boston, MA to begin treatment. Over the next few days, she underwent more tests and procedures, and we came to learn that unfortunately, all four of her pulmonary veins were severely diseased.

On December 14, 2017, Annabelle had open-heart surgery to repair the VSD, but also a pioneering attempt to resect the diseased portion of the veins. She made it through the surgery well, and after a collapsed lung and *many* scans and tests, was released from the hospital after a few weeks.

Months later, still in Boston, she continues to require around-the-clock care.

As a result of her PVS, Annabelle developed Pulmonary Hypertension, and requires long-term medication, as well as oxygen, to treat this condition.

She has had multiple blood transfusions, most recently just last week, to address symptoms of her condition.

Annabelle is also receiving chemotherapy. She does not have cancer, however, the chemo is being used to treat the proliferation of cells causing her PVS the same way they would treat the growth of a cancerous tumor. The use of chemotherapy as a treatment for PVS is considered experimental, and as a result of this designation, the cost is not covered by insurance.  

At this time, we are extremely grateful to the pharmaceutical makers of the chemotherapy treatment, as they have offered to donate Annabelle’s treatment for the first year. She will require chemotherapy treatment for the next 2-3 years at the least. We will continue to appeal to the insurance company to cover Annabelle’s treatment, however, we don’t have a guarantee it will be funded past her first year. Without support from the pharmaceutical company, the cost of this treatment alone will be $4,000.00 per month.  

Her growth is another concern, as at 9 months old, Annabelle recently weighed in at 13 lbs, and has had concerns of anemia requiring repeated blood transfusions. She has a Gastrostomy tube (G-tube), a surgically placed feeding tube in her belly, to help supplement her feeding and encourage her growth. She has never taken a bottle, and requires her mother to be available around the clock to breastfeed. On a positive note, Annabelle recently showed some curiosity toward solid food, so we are very hopeful this will continue.

On top of all this, Annabelle’s schedule is filled with routine procedures such as sedated Echos and lung scans - which require her to be admitted into the hospital due to the use of general anaesthesia - to see how her veins are progressing. The results determine whether and when she will undergo a procedure called cardiac catheterization. During this procedure, a long thin tube called a catheter is inserted into the vein and threaded through blood vessels to the heart. Doctors are able to use this tool to evaluate the amount of stenosis occuring, and to do work to reopen the diseased veins to promote blood flow.

What was originally thought to be a manageable defect has evolved into an extremely rare and difficult to manage medical condition. Annabelle has undergone open-heart surgery and four catheterizations in almost as many months since first being admitted to Boston Children’s Hospital. She is regularly admitted to the hospital for multiple days at a time to undergo testing and procedures.

Annabelle’s treatment will be long term, and as a result, her family has had to abruptly put down their lives and relocate to Boston. Her parents, Greg, a Firefighter, and Nikki, a Nurse Anesthetist, are used to being the ones who are hands on, saving lives. Now they are faced with just waiting as their baby girl fights to get stronger.

Neither are able to return to work as caring for Annabelle, as well as their son James (almost 3), has become a full-time job - especially without the support of their family nearby to help. James will not be able to attend a regular school due to Annabelle’s fragile immune system and the risk of his bringing home germs, so he will have to be homeschooled as he begins his preschool years.   

Although we may not be able to help Annabelle get better, we can help Nikki and Greg by supporting them financially as they try to piece together their new reality. They will likely need assistance in running their household, and James will require resources to fulfill his educational development. This on top of caring for Annabelle as her needs continue to grow, all without the ability to go out and earn their regular income.

Your support not only helps to cover the costs of Annabelle’s extensive treatment, but also means this family will be able to stay together in Boston and support each other as they strive to give their daughter the best chance they can.  

To everyone who has donated, we are blessed to have your support. Being able to keep our family together through this difficult time is a gift we are truly grateful for.

We are extremely grateful for any and all donations, and would appreciate it very much if everyone would share this fundraiser with their communities, casting it far and wide.

The love and support received so far has been a big part of what’s kept this family going in good spirits. If love alone could heal this sweet baby girl she’d already be in the clear. But for now, we must maintain an aggressive approach in her treatment to provide her the best opportunity to get better.  

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Sending you some Valentine’s Day love from Annabelle and big brother James!

February is heart month - a great reason to wear red for more than just one day ‍♂️, to raise awareness about heart disease and to continue to support those you know - and those you don’t - who are battling on this journey every day ❤️❤️
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Happy Thanksgiving!

Annabelle is thankful for today, everyday, and most importantly, thankful for your love.

Sending big hugs! xx
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Happy Thanksgiving Everyone!

Let's start this off with a special message from the Escarra family:

"This Thanksgiving our family has so much to be thankful for, most profoundly we are grateful that Annabelle is celebrating her second Thanksgiving! And we have all of YOU to thank for that. Without the love, support, and generosity of our family and friends, we could not be maintaining this journey we are on in Boston. We are so thankful to be here where Annabelle is receiving the best care and chance possible. Endless thanks and love to everyone who has donated and prayed for our family."

With Love, Nikki, Greg, James & Annabelle

Since our last update, Annabelle has overcome a few hurdles and hit a major milestone too!

We mentioned in the last update that Annabelle was going to have a mediport placed so she could start receiving a second chemotherapy treatment intravenously, and that procedure happened on September 25. She just had her 4th IV chemo infusion last Thursday.

She underwent another heart catheterization on Oct 31 - yes, Halloween. She was originally scheduled for 2 weeks later, but was moved up because she was requiring more oxygen and diuretics. Lucky for her, Auntie Kristin came the weekend before to visit and stayed the week to support the family while Annabelle was in the hospital again. Halloween was celebrated with full enthusiasm and Annabelle loved every minute of it!

During the procedure, a few balloon dilations were performed on her pulmonary veins, and 2 stents were placed, one in each upper pulmonary vein. This is to help support her veins staying open for longer periods of time, hopefully reducing the need for as frequent catheterizations. She had another blood transfusion after the procedure due to some Cath site re-bleeding afterwards in the ICU.

She is also on new blood thinning medication because of stents, and her pulmonary hypertension continues to be severe unfortunately.

On an extremely positive note, at 15 months Annabelle learned how to drink from a cup! She took her very first sip of water and hasn’t wanted to put the cup down since! She was exclusively breastfed as she utterly refused any attempt with a bottle, until she began to require the assistance of a feeding tube to keep her nourishment up. At 8 months, she would no longer breastfeed and had to be fed pretty much continuously by a feeding pump ever since, until now - she is spending less time on the feeding pump now that she is drinking some of her calories. We're very encouraged by this and hope she continues to progress, not just to grow big and strong, but that she may finally begin to taste all the wonderful flavours of real food! Here's hoping the aromas of Thanksgiving are encouraging!!

So this year, as you gather with family and friends to celebrate Thanksgiving, know that there will be prayers and many thanks in all of your names at our family's table.

Wishing you all the best, and a safe and wonderful Thanksgiving!
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Hello all, time for another update on Annabelle's condition.

Our little Annabelle has had a very busy month since turning ONE.

As you may remember, Annie B’s gastrostomy tube was switched out for a different kind of feeding tube, a gastrojejunostomy (GJ), which goes deeper into the first part of her intestine. The purpose of this is to feed into her intestine rather than her stomach in hopes of controlling the amount of feeds she loses through vomiting as this has always been and continues to be a problem for our little one.

While this did allow her to pack on a little more weight, it created a couple of complications including the less common (that’s our girl) intussusception, or telescoping of the intestine around the tube, causing an obstruction. In addition, the change in her feeds at the time also caused her to become fluid overloaded and go into respiratory distress leading to a scary ER visit.

Annabelle was admitted to the hospital and her GJ tube was removed, fixing the intussusception, and replaced with her previous G tube. She also required a lot of diuresing or removal of the extra fluids in her body to improve her respiratory status. Additionally, she required yet another blood transfusion to treat her anemia. She was tuned up during this stay and discharged when she was doing better.

Not long after, she was readmitted again to undergo a couple of procedures.

Unfortunately, she has been struggling with some recent GI bleeds and experiencing some bloody stools. This prompted her gastroenterologist to take a closer look at her GI tract so she underwent an endoscopy and sigmoidoscopy. There was evidence of some places where she had been bleeding but were not actively bleeding at the time, therefore did not require further intervention.

As our Annabelle is extra fragile, every procedure requiring general anesthesia is very serious and requires an ICU stay and extra care.

Following this procedure, it became very evident that Annabelle was in need of her next catheterization to help open those veins back up. A couple of days after her GI procedure, she went back to the cath lab for her fifth cardiac catheterization, this time 14 weeks out from the previous. Unfortunately, this one was a little tougher on our girl (and her family) when we learned that one of her veins had stenosed, or closed shut.

Losing a vein is the serious consequence that we’ve feared and tried to prevent, but is a known risk of Annabelle’s diagnosis.

Of the veins to lose, the one she lost, the right middle lobe, was “best” one to lose. She again required blood transfusions (two this time), as well as a platelet transfusion during her ICU recovery.

Based on these findings, the PVS team has decided they need to get even more aggressive with her treatment. They want to shorten the length between caths since there is another vein that looks like it is progressing and we want to prevent losing any more veins.

Additionally, they want to start her on a second chemo drug.

Currently, she gets her chemo through her Gtube, but the new one requires IV access and will be given every 2 weeks. This means she needs a Mediport, a special surgically implanted catheter to be placed for reliable access. This surgery will likely be coming up in the next week.

I realize this is a lot of heavy content, and although we don’t want to bombard you with details, we want those of you who have been so generous with your love, prayers and support to stay informed about the long road ahead for our little princess.

The good news is she is as happy and smiley as ever. She is doing great developmentally too! She's pulling up to stand and just started crawling in the last week. She is loving peek-a-boo, waving bye-bye and even starting to learn a little bit of sign language! Her favorite is the sign for “more.” :)

We continue to shower our Annie B and her family with love and support and we appreciate you keeping Annabelle active in your prayers and positive vibes, sharing her campaign, and helping to raise awareness about her condition, as this little peanut needs all the help she can get!

We appreciate all your love, prayers and support! Keep it coming! This girl is worth it!

Lots of love,

Team Annabelle
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$40,717 of $55,000 goal

Raised by 299 people in 13 months
Created December 27, 2017
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