Support Emily Mannarelli in her fight with EDS

I am starting this campaign on behalf of Emily Mannarelli and her mom, Molly. They are both very dear to me and to witness Emily's change from a joy-filled teen filled with dreams and plans for her future to where she is now is totally heartbreaking. Many of you know Em from growing up in Huntington Beach and going to HBHS. She loved being part of the Academy for the Performing Arts and was a brilliant makeup artist with a promising career ahead of her.

In February 2019, Emily was admitted to the ER in excruciating pain throughout her body. She left the hospital a week later with few answers. Since then Em has been diagnosed with Ehlers Danlos Syndrome, Dysautonomia, Iron Deficiency Anemia, Mast Cell Disease, and Gastroparesis.  After leaving the hospital, Em is still, a year and a half later, bed bound, and unable to eat, drink, or even stand. Since Emily's stomach is paralyzed, she is unable to eat anything the way we all do, right now she receives all her nutrition through a central line to her heart.

In July of this year Emily went to the hospital to have both a G and a J tube placed in hopes of eliminating her central line and to be able to have tube feeds. Unfortunately, the outpatient laparoscopic procedure turned into three open surgeries and a week-long stay in the ICU.

Em is home now and recuperating from those surgeries, but her body is not tolerating the tube feeds. She still has her central line which needs to come out as soon as possibly because it's a high infection risk and the doctors are now seeing signs of liver damage in her weekly blood work from the TPN (IV nutrition) that she is receiving.

Emily is solely cared for by her mom, Molly, who is a single mom of four. Over the next days, weeks, and months and even years ahead they will need to go to countless doctor appointments, hospital stays and surgeries. As you can imagine the medical costs are astronomical. The medical bills are mounting, there is so much that is not covered by insurance.

The financial burden has become too much for Molly to bear alone. The family is in need of a more reliable car that is accessible for Em to be transported to and from doctor visits. They also have to move soon and the new house needs work to make it wheelchair accessible for Em. It is our prayer that this Go Fund Me will enable Emily's mom to concentrate more on fighting this disease with Em.

We know so many people are in need and deserving of assistance these days. We humbly ask that you consider helping Emily if you are able. We would also appreciate it every bit as much if you would pray for Emily.

If you'd like to learn more about Emily’s story & diagnosis, please read below:

Em has been diagnosed with Ehlers Danlos Syndrome, Dysautonomia, Iron Deficiency Anemia, Mast Cell Disease, and Gastroparesis. Emily's stomach is paralyzed. She is unable to eat anything the way we all do, right now she receives all her nutrition through a central line to her heart.

EDS is a rare genetic connective tissue disease that affects the collagen ("glue") that holds your body together. This causes daily joint dislocations and disabling, chronic musculoskeletal pain, along with many other symptoms. It will be a lifelong battle for Em to control her symptoms, there is no cure.

Dysautonomia is a disorder of the autonomic nervous system that is responsible for control of the bodily functions not consciously directed, such as breathing, heart rate, and blood pressure control. This causes fainting spells, migraines, temperature regulation problems, memory loss, and more. Em is currently receiving saline infusions which has proven to be helpful.

MCAS  is the inappropriate release of mast cell mediators, leaving Em vulnerable to allergic reactions to anything at any time. Unfortunately, this also affects her ability to tolerate most pain medications which she desperately needs, leaving her with little to no pain control options. Em also has to be prepared at all times for anaphylaxis, a severe, potentially life-threatening allergic reaction.

Iron Deficiency Anemia has been the cause for many blood transfusions this past year. The doctors have yet to pinpoint the cause. Em will soon undergo a bone marrow biopsy in order to get some definitive answers.

If you can, please donate to this fund, and help Emily pay for her surgeries, and care. 

On behalf of this family that I love so much, I thank you for your help.