Testimonials, Letters & Messages
How Oakley’s Story is Saving Lives.
Letters to the Debbs Family
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“I'm not exactly sure who I will be reaching with this email but I feel compelled to tell Oakley's parents thank you for saving my son's life with his story. One week ago, my son Rory went into anaphylaxis from a single ant bite he got while playing at school. My son is 4 years old and has had a rough four years of asthmatic episodes and hospital visits due to crazy allergens. I too administer late night neb treatments, Benadryl, and do my best to keep his asthma under control. We have known for awhile that Rory had a severe allergy to ants and were given Epipens in the event of an emergency, but I never thought I would actually have to use it.
Last week, I picked Rory up from school and he was complaining of his foot hurting. I told him I was sure his shoes were too small and it was time for new ones. A few hours later he was still complaining of his foot hurting so I checked it out and it looked like a mosquito bite so I gave him a little Benadryl to help the swelling. About an hour after, Rory vomited and complained of his stomach aching, along with sweating and complaining of being dizzy.
It was ONLY because of your story that I read about 6-9 months ago that I knew what was going on with Rory.
Something clicked and I remembered about your son's stomach ache. I quickly got him in the car gave him the Epipen and made it in about 5 minutes to the ER. His blood pressure was dropping and his oxygen was plummeting. They administered another Epipen and stabilized him with Albuterol, another dose of Benadryl and steroids. We spent a long night in the ER, but thankfully Rory was ok. Your son's story saved Rory's life last week.
I am 100% convinced that I was meant to read his story last year. If I had not known of the symptoms Oakley had experienced I would have never thought that Rory was going into anaphylaxis. I get emotional reading Oakley's story again and I can only say that I think of him as an angel. Thank you for sharing. I'm so grateful but so very sorry for your loss.”
BLESSINGS, LYNDSEY WALTERS
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"This weekend, while at a family party my son came downstairs with hives around his mouth. We had all just eaten and he had been playing upstairs w his cousins. We had our EpiPens but no Benedryl, so we put some cortisone on him and kept an eye on him. About 15 minutes later, the hives dissipated and he went back upstairs to play. 10 minutes later he came back down to tell me his throat was hurting and I noticed him wheezing. He began coughing and his nose was pouring.
I immediately grabbed our EpiPen and injected him. He got a round of steroids in the ER and is doing much better now
I am writing this because there was a time, where I’d look for any excuse not to give the epi (oh it’s asthma, maybe he’s just getting sick, etc etc). I was constantly second-guessing myself or thinking I was overreacting. This time, however, there was no hesitation. All I could think of was Oakley’s story and I knew I had to act and fast!
Thank you from the bottom of my heart! You are true heroes."
WITH LOVE, AMANDA
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“To Oakley’s Mom,
I’ve been praying for you and your family since I first heard about Oakley in November. I can’t imagine what you are going through. My youngest nephew, Connor, was born on 6/18/05, his birthday is close to Oakley’s. Connor has blonde hair and blue eyes….and a severe peanut and tree nut allergy. In first grade some bullies at lunch teased him and tried to force him to eat a Reese’s Peanut Butter cup. Those bullies knew Connor could die if he ate it, but they didn’t care. My sister immediately pulled both boys from public school and now has both of my nephews in home school/cyber school. We had three major scares with Connor. Twice he was in anaphylactic shock. I witnessed one episode, I’ll never forget it.
When you posted on the two month anniversary of your loss I cried for you and your family. Your strength through your grief gives hope and strength to others.
What you are doing to honor Oakley’s memory is amazing. You have already saved lives by sharing Oakley’s story.
Besides donations, how can I help spread the word of the severity of food allergies? I work in a business park outside of Pittsburgh, PA. Mylan is headquartered there. I called them many times in a professional manner inquiring about the skyrocketing price of their Epi Pens. I’m anaphylactic to certain foods, so I carry an Epi Pen at all times, but my sister told me they are not 100% effective all the time. I’m glad that Mylan is now offering a generic form of the Epi Pen at a lower cost so that families can afford them. My question to Mylan every time I called was “how many children have to die before you make these affordable?” I had met my deductible last year and the cost was still $500.
Please let me know how I can help spread the word, I’ve shared Oakley’s story on Instagram and Facebook….but I want to do more. I’ve shared the Allergy Eats app on social media as well. Connor is so excited for this app as going out to eat causes anxiety for him.
I bought red glitter sneakers because glitter attracts attention and I hope people comment on them when I’m out so that I can raise awareness through word of mouth.
I continue to pray for strength and healing for you and your family."
KIND REGARDS, AMY SHUSTER
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"I’m emailing to let you know what an impact Oakley’s story has had on me with regard to my son’s condition. Since reading your story this morning our action plan has completely changed. My son, Sam, like Oakley has a tree nut and peanut allergy. He was first diagnosed when he was 4. He’s now 11. Until last weekend he hadn’t had a reaction since he was 4. We spent Friday night in the ER after his lip began to swell and continued to swell for hours.
He recovered and is doing well but my first line of defense was Benadryl. That’s what we had been told to do at first sign of symptoms and to only use an Epi-pen if he had trouble breathing.
After reading your story this morning our plan now is to give him his Epi-pen immediately.
From the bottom of my heart I wish this hadn’t happened to you and your family but I want to thank you for making us aware of the circumstances of what happened. By doing so, we’ve changed our action plan. By doing so, you may have just saved my son’s life. And for that I am so so grateful.
And because of that we will never forget Oakley…"
PRAYERS FOR YOU AND YOUR FAMILY.
– RICH FALK
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"I wouldn’t have given my daughter her epi pen for a reaction like Oakley had prior to hearing your story. Now I will. Last July my 3 year old had hives around her mouth after eating sunbutter and I gave her Benadryl and drove to the ED. It must have been tainted with peanut butter. (We were at her grandmas house) We could have easily been in your shoes. I think of you almost daily. You are saving lives while honoring Oakley. Thank you thank you thank you thank."
THANK YOU. FROM THE DEPTHS OF MY SOUL THANK YOU.
DANIELLE PERRY
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Dear Merrill & Robert,
I am writing to tell you that Oakley's story saved my 11 year-old son Robert's life the week before Christmas. One of my allergy-mom friends forwarded the news article of Oakley's death to a few of us with children that have life-threatening food allergies in early December. We each cried for you, knowing full well your story could have been any one of our stories.
When I first read about your son and what happened, I thought about how many times, countless times, I gave one of my children Benedryll and watched and waited. The other women on the email thread each said the same. I did what you did every time but once other, when my then 3 year-old began to choke because his throat was instantly closing and I used the Epipen on him.
I have two boys, Robert is 11, and Zachary is 8. Robert has a peanut allergy, Zachary is allergic to milk, fish and eggs, and both are asthmatic. We were out to dinner at a place that was amazing at handling our food allergies. So much so that I don't believe my son came in contact with a peanut, I think this is a new allergy. During dinner, his head suddenly got congested and he began to cough a little. He had no itchy throat, no hives anywhere, none of the signs I have always seen when one of them comes into contact with something they shouldn't.
We went home. He did the nebulizer treatment for the cough- he was on the tail end of a virus that had caused him to take daily liquid steroid and the nebulizer machine every 4 hours anyway. He hadn't used the machine after school when he should have, so his cough seemed to make perfect sense that it was related to the illness. He went to bed and woke an hour later and vomited. He had glassy eyes and told me he had a terrible headache. The conversation in my house turned to the likes of, it must have been a bad mussel or something.
At that moment, your story, Oakley's story flooded into my head. I just had this feeling that it wasn't an illness, something wasn't right, so I gave him the Epipen. I then took him to the walk-in dr. who sent us to the ER. There, despite more nebulizer treatments than I can count, Benedryll, liquid prednisone, and a second Epipen, his pulsox kept going down. His fingernails were bluish. He finally stabilized around sunrise. He spent three days in the hospital and they finally sent him home not because he had greatly improved, I believe, but because it was almost Christmas; his pulsox was still only around 94-95.
The doctors I encountered praised me for having the wherewithal to know to Epipen him with little to no symptoms of an allergic reaction and they could have been dismissed as something else. I don't deserve praise. YOU deserve praise. I have been an allergy mom almost as long as I have been a mom and still there is no part of me that would have done what I did without you having had the courage to share your story with the world.
Your story left the impact on me you had hoped and you and Oakley are who saved my son. It opened my eyes. I have always known what I am supposed to do for an allergic reaction-I just only did it the one time the symptoms were instantaneous when my son was choking! Your story frightened me awake because it certainly sounds like your experience was similar to others we have had.
I used to think the same about vomiting- that it was good because now the allergen is out of his body. Maybe it was the simplicity with which it seems your tragedy began with Oakley taking the Benedryll and going back to playing like my kids have done before. Maybe it was the striking physical resemblance between Oakley and my son or that they both love soccer, or that Robert's favorite color is red and how proud he has been of his red Nikes since he got them last spring. Maybe it was all of the above. Whatever it was, your story left a permanent impact on me, and truly inspired me to use that Epipen when nothing else seemed to point to an anaphylactic reaction.
As this was unfolding in the ER, and every day since, I thank God for you, for your openness, for starting the Red Sneakers for Oakley for awareness. You have been, and will continue to be in my prayers. Thank you, Merrill and Robert. Thank you for your braveness and strength. Words don't adequately express how grateful I feel. Please accept my deepest sympathies for the loss of your beautiful son.
I am truly sorry for your pain and suffering. I hope this letter brings you some small comfort-knowing your boy is changing the world. I wish you peace and love always. Warmest Regards,
NORA RYAN, NEW JERSEY