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Annabelle Eve

$38,870 of $55,000 goal

Raised by 278 people in 6 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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Happy Memorial Day Weekend Everyone!

A quick update on Annabelle’s procedure last week:

Annabelle had her 4th Cath this passed Wednesday. Everything went well, but there was still quite a lot of work that needed to be done to open up her veins. However, her doctor noted that he felt overall, she looked better than she did for her last (3rd) Cath, which is very good news since she went twice as long between procedures - 10 weeks - this time!!

Her Pulmonary Hypertension was quite high post procedure, so her breathing tube had to remain while she was transferred to the ICU for recovery.

She was able to have the breathing tube removed on Thursday, and had a follow-up Echo which showed that all of her veins had improved.

Friday morning she woke up feeling like herself again, full of smiles for everyone, and was able to go home by the end of the day!

Thank you for keeping Annabelle in your prayers and sending love to her! She is very happy to be out of the hospital and back at home.

If anyone is interested in learning more about Annabelle’s disease, this link will take you to a podcast on Pulmonary Vein Stenosis featuring an interview with Dr. Ryan Callahan, Annabelle’s Cardiologist here at Boston Children’s Hospital. It’s not easy to hear all the things said in this podcast, but it is very informative and does end on a positive note!

https://www.spreaker.com/user/10364800/podcast-18-final-done

Thank you all to those who have shared her campaign over the last week, we really appreciate the support! We hope everyone enjoys their long weekend - and we would be very grateful if everyone shared Annabelle’s story with friends and family as you gather and enjoy this holiday weekend :)
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From Nikki and Greg: We want to thank everyone for their continued love and support - it’s a huge part of what keeps us going in good spirits through all of this. She will be undergoing another cath procedure tomorrow, so please keep her in your thoughts and prayers.


We want to update you on how Annabelle’s been doing over the last few weeks, and what her needs are to come.

After an Echo and lung scan last Wednesday, Annabelle is scheduled to have another cardiac catheterization this week. This is will be her fourth in almost as many months since she was first admitted to Boston Children’s Hospital. Fortunately, it has been over 8 weeks since her last one, which is the longest she’s gone between procedures yet. We hope to go as long as possible between the catheterizations because being under general anaesthesia all day is very hard on her.

Her last cath showed all four Pulmonary Veins were restenosing, and significant work had to be done to open them up again. A positive note showed that her veins are growing in size, which is reassuring, however, the fact that the restenosing continues means she’s in for a long haul of treatment.

Her Pulmonary Hypertension has worsened, meaning the medication she is currently on for it will also become part of her long-term treatment.

She continues to receive chemotherapy as an experimental treatment to slow the progression of the vein stenosis. She will require this treatment long-term, for at least the next 2-3 years, if not more.

She has regular appointments with her cardiologist, and her gastroenterologist to monitor her weight gain and adjust her tube feedings. After a blood transfusion last week, Annabelle has been pretty well, and even became curious about trying solid foods - which is a major win. We have our fingers crossed this wasn’t a one-time thing, and that she will continue to show interest. She recently weighed in at 13 lbs and has been working on sitting up like a big girl.

At this point it is clear that Annabelle’s treatment is going to be long-term. The family has settled into a *cozy* house that they are renting near enough to the hospital, and has begun to face the decisions that they have to make moving forward.

Annabelle’s care is a 24 hour job. Above and beyond her schedule of appointments and procedures, she must be under careful watch at all times for any signs her condition is worsening and to manage her current symptoms. Until she fully takes to bottle feeding/solid foods - which at this time she is doing neither - Nikki is unable to return to work.

It’s likely they will require some assistance to balance caring for her, the household, and their son James, who is approaching the age where he should be starting preschool. Due to Annabelle’s fragile immune system, James will not be able to attend a traditional classroom, rather, homeschooling will be his best option.

With the possibility of shipping James off to school for the day out of the question, he will also require full-time care and attention at home. Greg continues to be supported by the most amazing, generous members of the Estero Fire Rescue, so he is able to be there for his family. However, with both parents required to be at home full-time, without their usual income, the mounting costs of Annabelle’s treatment and all that comes with it are starting to add up.

At this time we’re asking everyone to do something that we had previously shied away from - her condition has progressed, and now we need you to share this campaign. We are increasing our fundraising goal amount to better reflect the family’s needs over the next year to come. We are blessed for the support we have received so far, and are so thankful for the generosity of our family, friends, and loved ones. We hope that by casting this fundraiser far and wide, we will garner enough support to keep this family together while they continue to do everything they can to give their baby girl a fighting chance. Everyone’s support so far has meant the world to this family, that they are able to be together through this ordeal. Unfortunately, their needs are only growing.

So please, share this campaign with your communities, online and real life, and ask your friends to share it as well. If you feel like baking cupcakes and are looking for a cause to support, please think of us. If you’re looking for a reason to run your next 5K or 10K, please, think of us. If love alone could heal her, she’d be in the clear already. But for now, we must maintain an aggressive approach to her treatment to give her the best chance we can to get better.

sitting up like a big girl
looking cute while getting a transfusion
trying some food!
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On this day in 1952, Queen Elizabeth II succeeded her father to the British Throne. Today, she is the longest reigning Monarch in British history, at the helm for 66 years.

In more important news, Annabelle is home from the hospital!

A week after she was admitted back into the hospital, she underwent surgery to place her G-tube on Friday February 2nd. Recovering well over the weekend, she was discharged from hospital on Monday evening.

The G-tube (Gastrostomy) is a feeding tube that goes in her belly, a semi-permanent solution to the NG (Nasogastric) tube that was previously seen in her nose. This has become a necessity in her battle to gain weight and continue to grow.

As mentioned in the previous update, Annabelle has been diagnosed with Pulmonary Arterial Hypertension as a result of the damage to the right side of her heart. Along with medication, she is now required to wear oxygen at all times, so although one tube is gone from her sweet little face, you can expect to see a new one take its place.

Another (her third) Cardiac Catheterization will be scheduled in approximately 2-3 weeks, and at that time, doctors believe they will have a better understanding of her condition as a whole. Until then, Nikki, Greg, and big bro James look forward to Annabelle's company at home.

On another note,

If you weren't aware, February is Heart Month, and as such we wanted to take the opportunity to help support and raise awareness about Congenital Heart Disease (CHD) in Annabelle's name.

Mended Little Hearts is an organization dedicated to supporting families of children with CHD. They put on an event called 'Roar N Run', a virtual charity race, that raises money to help them support families. Auntie Kristin has put together a team in Annabelle's name - Annabelle's Walk for ❤️ Warriors - that we welcome everyone to join. The digital event (meaning anyone can participate from anywhere) runs from Weds February 7th - Weds February 14th.

If you're interested in participating in the event, or making a donation to sponsor the team, use this link:

https://www.crowdrise.com/roarnrun2018

Select "Join the Event" if you want to participate. Then select the "Register for the Event" option.

OR

Select "Donate to a Fundraiser" if you'd like to sponsor the team without participating.

Annabelle's Walk for ❤️ Warriors

The Escarras and Marenos, plus all extended family, are so grateful for the support that Nikki and Greg have received, not just through this fundraiser, but through the love and prayers sent by everyone. We want to pay that forward by doing what we can to help raise awareness and promote the organizations that work tirelessly to help families battling CHD. Whether you choose to participate in the Roar N Run, any other awareness event, or even just wear red one day and tell everyone why, we appreciate your support :)

xo

#AisforAwarenessAisforAnnabelle
Representing in Red and Rocking her Scar
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Hi Everyone,

It’s been a busy few days for Miss Annabelle.

After two weeks of freedom, on Friday Jan 26 she was admitted back to the hospital to undergo a sedated Echo and Lung Scan. The results showed there was some narrowing of at least one vein, leading them to schedule another Cardiac Catheterization. They decided to keep her in hospital over the weekend.

On Mon Jan 29 she had her Cath. There was a lot of work done - 3 out of 4 veins needed ballooning to help open them back up. She stayed intubated (the breathing tube) after the procedure, so she spent the night in the Cardiac ICU. Tuesday morning she was extubated.

Today, Wed Jan 31, we learned that the Cath was successful in opening up her veins again. Let’s hope we get a little longer this time before we have to come back for another one!

During the Cath they were able to take a much closer look at her heart and lungs, which revealed that she is still struggling with some heart failure. We are hoping that this will get better now that her veins have been opened up again.

They also learned that Annabelle now has Pulmonary Hypertension as a result of all of this. We are starting her on a new medication, and she will need to wear Oxygen as well to treat this.

On top of all this, we are still fighting the battle of her weight gain and feeding issues. She will be having another surgery to place a semi-permanent feeding tube into her belly (a ‘GI tube’), to replace the more temporary one in her nose. We do not have this procedure scheduled yet, but will update again as we can.

As we said, very busy few days for Annabelle and Family.

We are pretty emotionally exhausted after this weekend, so we appreciate everyone’s love and prayers more than ever right now xo
On Friday, before her Echo & Lung Scan
Today, resting after a busy few days
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$38,870 of $55,000 goal

Raised by 278 people in 6 months
Created December 27, 2017
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