Support Olivia's Fight for a Healthy Future

As some of you may be aware, last year Olivia went to Boston for valve repair surgery. After a bumpy road to recovery, we were finally discharged on Christmas Eve. Now, a year later, we are taking our final journey to rebuilding her heart so that we can buy time before she’ll need a heart transplant.

In my second trimester, Olivia was diagnosed with heterotaxy, this rare condition only occurs in one out of every 10,000 live births and without proper treatment can be life-threatening in infancy and childhood. In Olivia’s case, she was born with double outlet right ventricle (left side of the heart never formed), asplenia, and switched stomach with a midline liver.

We are returning to Boston Children’s hospital at the end of October, one month shy of her 4th birthday, for her Fontan procedure. The Fontan procedure provides a palliative treatment option for pediatric patients with functionally single ventricle congenital heart disease; This single ventricle carries the job of pumping blood to the lungs and the systemic body.

Out of the 3 heart surgeries, this one will be the most difficult in surgical procedure and recovery especially with her complex autonomy due to her heterotaxy. Despite this, I have high hopes that it will be a success. Since her first breath, she has defied expectations, flourishing where others thought she would drown. Knowing how it could have been, what we had prepared ourselves for, her health has been such a sweet blessing and there isn’t a moment that I don’t realize how lucky our family is.

We had planned on receiving reimbursement from our insurance to cover lodging but was denied as it did not meet the requirements for compensation, now we will have to pay almost $700 a week for our stay. This is quite unexpected and has added stress to an already stressful situation.

For this reason, we are reaching out to the community for assistance.

Thank you for taking the time to read our story,

Stephanie and Marshall