Evelyn’s Story

Site created on July 3, 2010

Hi, I'm Evelyn. When I was 10.5 months old I was diagnosed with an Idiopathic autoimmune disorder. While the doctors don't know if it is temporary, or (God Forbid!) an autoimmune disease I am still grateful to have wonderful family and friends who care! Thank you for your prayers and support through this CRAZY time! Read "Caught off Guard" below.

HOW TO SUPPORT EVELYN:

T SHIRT: You can order a tshirt and wear it on Evelyn's treatment day or any day to show your support. Take a picture of all wearing it and email it to TheEvelynFactor@gmail.com. This supports her emotionally/mentally, especially on treatment days! 

Link to TShirt and search for team evelyn: https://shop.spreadshirt.com/CauseAwarness

FACEBOOK: https://www.facebook.com/TheEvelynFactor/

COMMUNICATION: If you would like to send a direct message to Evelyn you can email her at TheEvelynFactor@gmail.com. I would like to let everyone know that their supportive comments are so priceless to supporting Evelyn and her family, so please continue to feel free to leave comments in CaringBridge as well. :)

MAIL: Evelyn Villarreal 11230 Cleveland Ave NW #695 Uniontown, OH 44685 Something as simple as a card will always make Evelyn’s day!

DONATIONS: We are not necessarily asking for donations, however, many people do want to donate to her cause. We have started a Go Fund Me Page: https://www.gofundme.com/the-evelyn-factor?pc=ot_co_dashboard_a&rcid=79c6fdf545814b78933e6f2a593b3209 All donations will go towards Evelyn as items that will make her more comfortable or towards traveling expenses to NIH or physician visits.


TRIBUTE: Any donations received on CaringBridge as a "tribute" to Evelyn go toward CaringBridge to fund this website; (the money does not go to us) if you would like to support this free website. 


CAUGHT OFF GUARD

And so we are still "caught off guard" due to the fact that the doctors do not know what caused Evie to have a Hemoglobin of 3 (should be 10-12 /gives the body Oxygen), platelets 5 (should be 250-600/clots blood), neutrophils 0 (should be 5-11/fights off infection). A bone marrow aspirate was negative for leukemia, parvo virus was negative, epsbarr virus was negative, coombs test was positive, and the two pending tests are Fanconi & Anti-neutrophil antibody which the results should be in late July. Evelyn has received 4 blood transfusions (1 was packed RBC), and one IVIG transfusion (Immuniglobulin).

This all started when over a period of two weeks Evie didn't feel well, however, it was the same symptoms of teething and so it was dismissed. Then the third week she slowly ate less and less, by the sixth day (6/17) of tappering her food down, she only ate 4oz of formula. I remember it was 4pm on Thursday 6/17/10, when I took Evie to see her pediatrician. The doctor said "it presents like teething, but lets get some labs for peace of mind". I will never forget how simple of a statement just saved her life! I took her to the lab and there is where we discovered her hemoglobin was 3! Most children are not awake at this level...not to mention that by the time we were transported via squad to the PICU (pediatric intensive care unit) her hemoglobin was 2.6 ,which usually is a level unsupportive of life, therefore, "The Evelyn Factor" was born. Dr. Besunder at Akron Children's Hospital was the one to say it first, and now I just use this phrase as a reminder of that while I may have an ill child, atleast she is gifted with a "factor" that only the Lord could have given her.

Evelyn’s current diagnoses: GLILD, CVID, ITP, and Evans Syndrome. They will be doing testing for Lymphoma to rule it out, soon.

Newest Update

Journal entry by Samantha Speer

First time leaving the house since IVIG last month. Made it through all the “COVID19 Checks” in the hospital and now in IVIG. Everyone is wearing masks and not many people are here. The parking deck didn’t have many cars either. Really strange but glad to see so many people taking the initiative to keep people safe. 

Thank you MaryJo for the masks with filters!  We feel so much safer going to IVIG and they are gorgeous!!! You do Awesome work!!! 

We love you all! Stay safe out there! 
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