Moxie's Heart Surgery

Summary

Nine year old Moxie must have open heart surgery as soon as possible to protect her aortic aneurysm from rupturing. This surgery will be done in London so all expenses are required before surgery in April 2023. Marfan Syndrome is a complicated and vulnerable genetic disorder that has already taken most of her eyesight. This open heart surgery is the only path forward for her safety and good health.

This is an appeal to help fund open heart surgery for Moxie Garrison.

Moxie is an extremely intelligent and loveable girl that was born with a rare genetic disorder known as Marfan syndrome. Marfan syndrome is caused by a defect in the gene that enables your body to produce a protein that helps give connective tissue its elasticity and strength. Therefore, a person with Marfan syndrome can have problems associated with weak connective tissue. The most common problems are with the heart – aortic aneurysm and valve regurgitation (Moxie has both), and eyes – dislocated lenses and near-sightedness (Moxie has both). Multiple eye surgeries have left her with a disconnected retina/blindness in her right eye.

Moxie’s most concerning issue at present is her aortic aneurysm. Moxie’s aortic aneurysm was discovered shortly following her diagnosis of Marfan syndrome at the age of two. Her aortic dilation at that time was about the size of a normal adult. She is monitored by an echocardiogram every 6 months and takes a beta blocker medication to decrease pressure on the heart. Moxie’s aortic aneurysm is now 49mm (the normal adult aorta is around 30mm), and ALL the cardiologists we have consulted agree it is time for surgery.

We (Moxie’s parents) have researched the surgical options and have had meetings with the leading cardiac surgeons in the United States and the international community. Moxie’s best option is the PEARS (Personalized External Aortic Root Support) surgery. The leading cardiac surgeon for the PEARS is Conal Austin in London. We have had Zoom meetings with Conal Austin and his team. He states Moxie is a good candidate for the PEARS surgery. Unfortunately, the PEARS surgery has yet to be approved by the FDA even though it has been successfully performed in Europe for almost 20 years so it is not yet offered in the United States. My wife and I both work full-time and have health insurance. However, our insurance does not cover ANY procedures outside the United States. Moxie will be scheduled with Conal Austin within the next two months. We are currently arranging flights, accommodations and scheduling procedures.

Moxie is so amazing and has been so brave – she has made us laugh so many times when we really felt more like crying. She loves dinosaurs, and when she grows up she wants to be a paleontologist. You can imagine how far out of our comfort zone it is for us to ask for this help. Our children and their needs can take us places we never could have imagined. If you can help in any way, we would appreciate it very much. Please send your prayers for Moxie and positive energy. Please share Moxie’s story. If anyone would like additional information, please do not hesitate to contact us.

Blessings and gratitude to all,

Moxie`s parents: Don and Marketa Garrison