Cure Saoirse's Peanut Allergy

$2,330raised of $3,550 goal
65%

Organizer: Pamela Kelley Beneficiary: Saoirse Kelley

This fundraiser is closed

Saoirse has a life threatening peanut allergy. Saoirse's allergy is severe. If she were to ingest even a microscopic amount of peanut, she risks the possibilty of fatal anaphylactic shock.

Saoirse was diagnosed at age 2 with peanut allergy. Her first reaction seemed mild with small hives around her mouth after eating some peanuts. A year later, in the summer of 2011, Saoirse got a tiny amount of peanut residue in her eye which precipitated an anaphylactic reaction. In 15 minutes, her eyes and face swelled, she was sneezing and coughing up fluid and mucus uncontrollably, and her breathing was threatened. She became quiet and lethargic on the ride to the hospital, and we were terrified. The doctors placed an IV and gave her medication to fight the reaction. Saoirse was too sick to even fight the needle stick. In the picture gallery there is photo of her in the ER after 1 hour of being stabilized.

Currently our only treatment is to avoid peanut and carry Epi-pens with us wherever she goes. Sometimes, even epinephrine cannot reverse anaphylaxis once it starts. This is why we obsessively check labels. We avoid most restaurants. Saoirse cannot go out for ice cream. She can't eat birthday cake at her friends' parties. She is 4 years old and she can tell you what foods threaten her life. Saoirse wants to "belong" and be able to do and eat what everyone else can. As her parents, we just want to make sure we don't lose our baby over a peanut.

There is hope for Saoirse!

Her allergist offers groundbreaking OIT (oral immunotherapy) treatment for peanut allergy. This consists of taking tiny amounts of peanut by mouth twice a day, and increasing the dosage weekly. If successful, she will be able to eat 12 whole, real peanuts twice a day - effectively curing her. Saoirse is excited to know that she will one day be able to eat food without fear.

Our insurance company is refusing to cover this treatment and we are asking for your help!

Saoirse's start date for treatment is May 2, 2013. She will then go once a week to the allergist for an updosing appointment. There are anywhere from 20-25 updosing appointments during the therapy. After that she will be on "maintenance" and eat peanuts once a day to maintain her tolerance to peanut.

Here's some videos of her amazing doctor - Dr. Richard Wasserman - describing the process:

Dr. Wasserman on the show Mom's Everyday

Dr. Wasserman on NBC 5

PS: her name is pronounced sayr-shuh, it's Gaelic for freedom and liberty. You can listen to author Frank McCourt pronounce her name here: Saoirse
Updates

Updates

04/09/2013
by Pamela Kelley
I haven't posted in a while. We got our blood test results last month and her numbers had dropped on peanut. The Dr. thought perhaps she might be outgrowing her allergy and asked we do a food challenge to prove her allergy. Today we completed the challenge - well actually failed it. She received her first dose of peanut, and about 3 minutes later she said "Mommy, my lip feels funny" Sure enough, her lip was swelling up! This was about 3/100ths of a peanut that caused this reaction. We stopped the challenge then and there because that was enough to prove she was still allergic. Imagine what her reaction could have been at an entire peanut! We got sooo lucky that it was just a swollen lip with the tiniest dose.
Share This Update!


03/14/2013
by Pamela Kelley
We had to raise the goal amount today. We have been informed that the billing estimates given were incorrect, and we have to pay for an office visit each day we go in for treatment on top of the payment for the updose. This makes things quite a bit more expensive, but we will get there, one way or another!
Share This Update!


03/03/2013
by Pamela Kelley
Another lowering of goal today as we received another donation in the mail. Thank you to Grandma! We love you!
Share This Update!


02/20/2013
by Pamela Kelley
We are lowering our goal amount again thanks to more donations that came outside of the site! Many loving thanks to the Sevak family and the Peterson family!!!!
Share This Update!


02/10/2013
by Pamela Kelley
We are still on track for May 2nd. She goes to an appointment in April to check her lung function, her asthma has to be well controlled before we can start OIT. We are also going to do another blood test before she starts to check her IgE level to peanut. Along with that we will run tree nut levels to see if she is allergic to any tree nuts. We generally avoid them too because most tree nuts are processed along with peanuts in factories, but have been eating peanut free almonds and pistachios at home. We just want to make sure before we try any others like pecan, walnut, etc. Crossing our fingers!
Share This Update!


02/05/2013
by Pamela Kelley
Whoohoo! I'm so amazed. grateful, and just plain humbled. We have raised over $1250 dollars in less than a week! THANK YOU!
Share This Update!


02/01/2013
by Pamela Kelley
Thanks to a generous donation that Johnna Nitcholas-Ivey sent to us, we have dropped our goal amount! We can't manually add donations to the site, so we will be dropping the total goal when we get donations that don't come through the site. Thanks Johnna!

 


Share This Update!


01/31/2013
by Pamela Kelley
We have our appointment set! May 2nd we will arrive at the office at 8am. We will stay all day until around 3 or so. Saoirse will get increasing doses every 15 minutes of peanut solution and the goal is to end at 2.5mg of peanut protein. This is about 1/400th of a peanut. If she starts having symptoms at a lower dose they will stop the process and send us home on the last dose she is okay with.

Thanks everyone for continued support! Please share and pass along.
Share This Update!


01/29/2013
by Pamela Kelley
Thanks so much! We are so grateful that we have reached 3% of our goal in less than 24 hours. We are feeling the love for sure. <3



Share This Update!
Supporters

Supporters

Comments

Comments


Get Fundraiser Updates
More photosView Gallery

Gallery

Contact the Organizer

Widget code for Cure Saoirse's Peanut Allergy | Medical Expenses - YouCaring

Copy the embed code shown then paste it on your site. You can select from 3 premade sizes.

x

Just copy the code above and paste it on your site!