Another tragedy .... so sad

[candyguru]

http://www.wptv.com/news/region-c-palm-beach-county/west-palm-beach/local-family-warns-of-dangers-of-nut-allergies-after-11-year-old-dies



WEST PALM BEACH, Fla. - The Debbs family of West Palm Beach suffered a horrible loss over the weekend.

Their 11-year-old son died from complications due to a nut allergy.

But just days after the tragedy, they are taking action in an effort to save lives.

Merrill Debbs said it all happened so fast. Her son, Oakley, went to the hospital last Wednesday. On Thanksgiving Day, he was on life support.

On Saturday, he was gone.

But this week, his family is starting a foundation in Oakley's  memory to raise awareness for the dangers of nut allergies.


"He was little my rock star," said Merrill during an interview with WPTV's Alanna Quillen on Monday.

Despite his allergy, Oakley also rocked it on the soccer field.

"He loved to play soccer more than anything else," she said. "He loved sports. He wanted to be a quarterback. His main idol in life was Eli Manning."

Merrill said Oakley was usually very cautious about what he ate. His school, Rosarian Academy, ensured that Oakley ate his lunch with other children who also suffered from nut allergies, separately from other students.

"He always checked the labels, he was always aware of nuts in any foods," she said.  "And we thought wow, we've made it this far. Oakley was doing so well. He was quarterback this year in flag football, just like he wanted."

But during a thanksgiving family vacation last week in Vermont and Maine, Oakley accidentally ingested cake containing nut resin.

"He had had a fabulous day. He played paddle. He had gone to the trampoline park and was doing backward flips," Merrill said, describing what was supposed to be a normal day while family and friends were preparing for Thanksgiving.

"He was running through the house and there was a coffee cake that had been left out on the table. No one had put it away, it was a bit haphazard. The kids just grabbed that as something to eat. And Oakley grabbed it. And he ate it," she said.

Oakley went into anaphylactic shock. Merrill said he also suffered from seizures and cardiac arrest during the ordeal.

"We resuscitated him three times in hopes we could bring him back. We used the Epi-pen three times and it did not work," said Merrill. "By the time we got to the hospital, he was basically brain dead, but I wouldn't let him go. There was no way I could let my rock star go."

Oakley died in his father's arms.

"He's the man that I always wanted to be myself. I'm just so heartbroken that he's gone," said Robert Debbs.

Just days after  such a heartbreak, Oakley's family is taking action. They're creating the "Red Sneakers Foundation" in their son's memory.

"In every sport that he ever played, his sneakers always had to be red," said Merrill.

Although still in the beginning stages of creating the foundation, the family's first step is to ask people to wear red sneakers this week. The goal is to have those red sneakers someday represent the dangers of nut allergies nationwide.

"The rest of my life is going to be filled with this loss, I need to think about this loss, I need to make it positive," said Merrill. "I need to channel it into something so that the community will understand what a peanut allergy is."

Through the foundation, the family hopes to create educational programs, research and public policy initiatives.

"If we continue this advocacy of his red sneakers, that will keep his shining light alive, because he deserved it," said Robert. "Anything we can do to help another family."

Oakley leaves behind a twin sister, Olivia. She now wears his favorite red sneakers.

"I know that he's with me. I know that he's right next to me right now," she said.

"He really left his footstep in the sand," said Cathy Duemler, Oakley's grandmother. His red shoes, which he used to play many of his sports activities in, fit her feet perfectly. She's now wearing them regularly.

There will be a benefit soccer tournament on Saturday, Dec. 10 at 10 a.m. at the Palm Beach Recreation Center . His family is encouraging kids of all ages to come out ready to play, wearing red sneakers.

Click here to follow the Red Sneaker movement website , which is still in progress.

[candyguru]

http://www.huffingtonpost.com/entry/a-childs-death-does-not-become-us_us_583c6c88e4b050dfe6187e9e?

[GoingNuts]

I was trying to post this from my phone, but it wouldn't let me.  *Sigh* 

[PurpleCat]

 

[spacecanada]

Updated story: his parents gave him Benadryl, Epi was delayed.  Epi must always be first!

http://allergicliving.com/2016/11/29/after-sons-nut-allergy-tragedy-family-urges-food-allergy-education/

Heartbreaking.

[GoingNuts]

Just sent that link to DS.   

[my3guys]

Absolutely heart breaking.

[GoingNuts]

When I sent this to DS, I explained that it wasn't to meant to be a scare tactic or a 'Mom Nag", but it was really important to see how a reaction that didn't seem like much at first can go really, really wrong.  How under the circumstances of his reaction this summer waiting wasn't completely unreasonable, but unless he was in a completely controlled situation like that, he must, Must, MUST Epi himself immediately, and not wait.

[CMdeux]

Yes-- same, GN-- and I've also reminded DD and her BF that this is exactly the same thing that cost Natalie Giorgi her life.  In spite of having a loving, attentive PHYSICIAN parent there at her side-- in spite of having epinephrine administered in abundance once it became CLEAR that it was very severe anaphylaxis in progress.

The trouble with that is that if you wait for those cardiovascular grade 4-5 symptoms to appear... you may already have reached that 'tipping' point-- beyond which pretty much nothing but a volume resuscitation is successful.     

MEIN GOTT, how I wish that our specialist physicians weren't so afraid of scaring parents and patients with this information-- there is a point beyond which epinephrine is just too little, too late.    It might not be enough to save everyone from a massive/direct ingestion-- no-- but maybe it'd be a step in the right direction. 

My heart just breaks for this family. 

[spacecanada]

Reading this story is reassurance, in a way, for all the times I've Epi'd myself before things got critical, instead of waiting it out like I do way too often.  Because waiting could become way, way worse - you never really know which reactions will stay mild and which ones will blow up.  It's encouragement to keep giving Epi early, despite what some doctors say.  I hope this family's message of just that will ring true with many people with food allergies, their parents, and caregivers.  (And doctors and allergists too!)

[PurpleCat]

I just forwarded the link to DD as a reminder, why Epi is most important.  It's going on 4 years since her last anaphylaxis...I don't want her to hesitate either.

[my3guys]

This is a tear jerker for sure.

Oakley's parents were on the Today show:

http://www.today.com/health/after-11-year-old-boy-s-sudden-death-mom-warns-t105529

I admire them beyond words for their strength and desire to help others. They've already gotten a letter from someone in the UK, who gave the epipen because of their story.

[BensMom]

Ok, wow, I think this is an eye opener for me. DS's reaction history consists of 3 reactions I think. The first was before he was diagnosed. He got a bump on his lip. We gave Benadryl and it cleared up. Second was maybe 2 years ago when he ate out with friends and felt something wrong--not sure what. He took benadryl and was fine. Third was in Israel and he epi'ed immediately. I'll have to ask the difference between the two he had in the past couple years. For a bump or swollen lip, I'd say take benadryl. It's not anaphylaxis.

I'll admit that since ds was diagnosed at age 4 and never had another reaction until age 19, I haven't kept up with reading all the stuff and making sure I'm on top of things. I've heard "epi first", but I guess part of me never asked whether that was just for anaphylaxis or breathing trouble or if it was for even minor reactions.

So what should I be telling DS?

(And it bugs me that the first article said "despite his allergy, he rocked it on the soccer field." What's his allergy got to do with anything??)

[rebekahc]

BensMom, for DS with a known history of anaphylaxis his doctor's instructions are:

For KNOWN ingestion of peanut/tree nut, epi even if no symptoms.
For possible ingestion, epi at first symptom.
For symptoms with no suspected ingestion, epi if two body systems are involved or if he has one system involved but the symptom is chest pain or breathing difficulty (based on his past history).

[Macabre]

Same.