A New Heart for Cora
For 10 years, Cora has beat medical odds and thrived. She has endured unexpected hospitalizations, visits to the emergency room and three heart surgeries. Now she needs a new heart. Cora has been listed as a priority candidate (1A). The transplant team at Children's Hospital of Philadelphia (CHOP) have seen kids with Cora's physiology go down hill quickly, without warning.
The 'call' can come at any moment and the family must be ready to respond immediately. Insurance will cover the majority of the medical cost, but there are mounting expenses that are not covered -- including frequent travel and the associated costs of maintaining two households. The financial and emotional stress will be tremendous. We can all help by trying to ease the financial burden, allowing the Guerins to focus their energy on Cora's recovery and her two younger siblings.
This is where you come in. I am asking our community, our friends, local leaders and caring individuals to work together to assist Cora as she fights for a healthy future and for her family in their time of need. All funds raised from this campaign go directly to Cora and her family.
Any contribution is greatly appreciated. Anything you can do will go a long way toward helping a brave young girl who wants, and deserves, to lead a healthy and happy life. Despite all these obstacles, Cora's brilliant smile continues to shine and inspire all of us that know and love her. Now is the time you can help.
Read "Cora's Story of Hope" at littlehearts.org:
From the Dr. Oz show in October 2014:
Cora meets her heart twin, Lorelei.
The last update in May 2016 was the time when Cora’s health began to decline. We put it down to tiredness with all the end of year festivities as she was moving on from 5th grade to Middle School. She played the trumpet in band and participated in the Wingman Running program ( https://wingmanleague.org/what-is-wingman). At the end of the program she planned to run one lap in the final run day, but completed 6 out of 10. This is an example of the triumph of Cora’s will over her physical challenges and is also one of the many examples of how our community sustained her spirit.
Cora became a frequent flyer at the Children’s Hospital of Philadelphia from July 2016 to November 2016. Her heart function decreased further, to the point where she was on IV medication 24/7 and in the beginning of November, Mark and I signed a release for her to return for a surgery to implant a Ventricular Assist Device (VAD). We were preparing to tell Cora about this. Throughout each inpatient stay, Cora was very positive and made the most of her time there.
We made wonderful friends and appreciated the reason Philadelphia is known as the City of Brotherly Love. The hospital in itself is a gentle, kind community that made it possible for her to feel optimistic and understood. Her brother and sister were well loved at home, which made the separation bearable. Mark was an absolute rock, having made the trip down with the kids as often as possible.
The day before Cora’s gift arrived, we discussed her discharge date. Cora was adamant that she did not want to leave, but couldn’t “put her finger on” the reason. Cora was used to going home and returning with poorer health. The blessing of this inpatient stay was that it enabled her to gain a little more strength.
That weekend Mark took Stephen on a rare trip to Chicago to watch Ireland play New Zealand in rugby. It was the first time in 111 years that Ireland won against them, and the boys left right after the game started to get to Philly in time. Stephen couldn’t have been more proud to return for Cora. Amee was transported from CT by her other Moms, Betsy and Kristin. It was a time I could barely give to Amee and Stephen, and they stepped up to the responsibility in ways you wouldn’t expect of their age.
One of her nurse practitioners believed that Cora did not have the physical strength to recover from this surgery, but was very spiritually strong. This and your prayers stood to her. Your generosity allowed us to forget about the financial strain that comes with hospitalization, travel, and the comforts that made her room (all 12 of them) like home.
There are so many highlights of her waiting time to her recovery, from friends we were blessed to make to her first catheterization without sedation in December 2016. Cora spoke to one of the Philadelphia Flyers by phone during the procedure (they arrived at the hospital at the same time). I received a text at the end confirming she was finished, which allowed me to get her FaceTime with the other players. Cora’s resilience has been only amazing.
Cora was readmitted twice for illness, but managed well each time. The fund allowed us to accommodate living away from home, as well as enable her siblings to attend an after school program while I was away. Please know that all you shared has been put to great use, and has been so appreciated. It was hard having to stay another month, but she did well in her tutoring. Cora managed to achieve high honors while she was awaiting her heart, and returned with high honors this past semester.
Cora has gone from monthly hospital returns and catheterizations to visits every three months and an annual catheterization. We continue to pray against rejection and cancers related to her immunosuppressant medications (as well as frequent x rays). We’ve been informed that transplanted hearts last 10-15 years, but have heard great stories of others who have done so well.
Cora is hoping to meet her donor family but we have not had a reply to date, and we respect their decision to contact if they choose. It has been tough settling home. Cora is gaining strength and learning how to adapt to her new physiology as she also enters adolescence. We are missing good friends who passed and processing the enormity of the last 12 years.
Cora is taking great care of herself. She attempted to join the field hockey team but was starting physically behind everyone. She enjoyed a position as scorekeeper to learn the game. She ran the Southbury Turkey Trot on Thanksgiving morning with the whole family. This week she walked/ran 5 miles on the treadmill.
After all this time, I’m still unsure how to thank you adequately. Please know we appreciate every name and thought behind every donation, and all the creative ways our communities, current and past, helped us through. Our friends and family have been a blessing. There was no template for how to navigate this time, and our schools’ staff gave Cora the gift of normal days and privacy while supporting her at home and away.
I’m working on a base in which to share our experiences though the process, which you’re welcome to access and share at my Pinterest Board “Inpatient and Outpatient Advocacy”: https://pin.it/dmgzecqxjr53wh. Cora and I are glad to answer any questions and talk with anyone in a similar circumstance. Conversations like these with friends who have been in these situations helped us tremendously.
Wishing you all well and hope you have a wonderful start to 2018,
Val with love and thanks from Mark, Cora, Stephen, and Amelie
May 23, 2016
Individual Entry ~ $150
Foursome ~ $600
Sponsor a Tee ~ $100
Registration & Lunch ~ 11:30am
Shotgun Start ~ 12:30pm
Dinner at Gaelic American Club, Fairfield ~ 6:30pm
Open Bar, Music & Prize Drawings ~ 6:30-9:30pm
For More Information use contact button on this site...
Fairchild Wheeler Golf Course
2390 Easton Turnpike
Fairfield, CT 06825
Saturday, April 2 from 7:00-10:00pm at Hopkins Vineyard in Warren, CT.
Wine tasting included a Hopkins’ wine glass to take home. Both wine and non-alcoholic choices will be available. An assortment of local artisan cheeses, appetizers and dessert choices will be served.
Visit with our guest herbalist and make a personalized herbal sleep pillow. Or enjoy a glass of wine in the loft and desiign your own bottle-art or hand paint a wine glass to take home.
A silent auction features items from local merchants, artists and restaurants along with several wine baskets. We are still accepting donations if there is a good or service you can offer.
All Hopkins merchandise and wines will be sold at a 15% discount. These make great summer wines – stock up!
Tickets to the event are $75 person and are limited. Help us spread the word – invite friends, family and neighbors.
We are working on offering low cost babysitting and van transport to and from the event. Updates will be shared as soon as they are available. Please let me know if you are interested in either a babysitter of van ride to assist with planning.
I sincerely hope you are able to attend and look forward to a wonderful evening. Please, contact me via the gofundme site to purchase tickets at your earliest convenience.
My daughter is currently in Cora's grade (5th). There is a group known as Wingman Running, that is overseen by two incredible people, Amy Parrot and Brad Vesneski. I pick up my daughter most days after school and there is Cora...running, running, running. She has chosen not to let her heart condition slow her down at all. She is an amazing person with one on the best attitudes of life. Just last week we all saw her running the 3 mile....she conquered that run just as she will conquer life. We are so proud of you Cora.
Life without the Guerins would be a very boring life indeed. Cora, we love you to the moon and back and can't wait to be there for you at CHOP for your January transplant appointment. I am SO proud of you for being a big girl and getting your shots yesterday! And- just like I promised- it wasn't a tetanus shot! Lorelei says she love you. :)