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33 Things Parents Do When They Have a Child With FPIES

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Food-protein induced enterocolitis syndrome (FPIES) is a type of food allergy. FPIES is a delayed food allergy of the gastrointestinal system, which means a reaction may not happen until hours after a trigger food exposure. FPIES is most often diagnosed in infants and young children although school age children and some adults are living with this rare type of food allergy. Someone living with FPIES may react to one or two foods and some may have multiple food protein “triggers.” There are not medical tests that can determine which foods will trigger a reaction. The only way to know if a food is safe to include in the diet is through food trials.

A diagnosis of FPIES can be life-altering. It changes the way a parent approaches food introductions with their baby and influences the way the family views food – at home and in social settings. A parent learns to be acutely aware of potential food allergy exposures in all aspects of the day’s activities.

Sharing from the FPIES community, these are some of the things parents of children living with FPIES are doing because of the diagnosis that other people may not realize.

1. “FPIES isn’t a diagnosis for us, it’s an island. We live on this island isolated from family, friends and the community. We aren’t ‘anti-social.’ We would love to be at the next graduation party, BBQ, birthday party…but the risk is too great and the stress level too high for us to attend. So when we say, ‘Please stop and see us! Please come visit anytime!’ we aren’t being polite, we truly want company.” – Alliyson F.

2. “Thankfully our FPIES journey ended at 22 months; but when our first daughter had FPIES to dairy, soy, rice and oats, if we were visiting family or friends or a function, I would scan floors and surfaces looking for stray grains of rice, etc… Everyone hated it because they thought I was judging their cleanliness, especially when I was down on all fours picking up microscopic pieces of crumbs. I got told so many times I was creating the allergy by not letting her have small amounts of these foods. Unless you are an FPIES/allergy parent you just don’t get it.” – Louise B

3. “My daughter is 8 and still living with FPIES. We move a lot due to my husband’s job about every two to three years. I constantly have to research the areas we live. Finding new doctors, local restaurants and even grocery stores that offer the brands and things she needs. It gets exhausting.” – Amanda C.

"Finding new doctors, local restaurants and even grocery stores that offer the brands and things she needs. It gets exhausting.” – Amanda C.

4. “Wipe all the children’s hands and faces before the kids sit down to the shared morning tea I’ve provided. I’m sure their parents think I’m a germaphobe – but I’m a banana-phobe.” – Kellie L.

5. “I am still in the breastfeeding stage. My little one is 4 months and reacting through my breast milk. I donate most of the milk I end up pumping because unless I know it’s 100 percent safe (and getting to a baseline has been a real struggle for me) I don’t keep it.” – Nicole K.

6. “Making sure my son knows not to take food from strangers, other kids or anyone really unless I say it’s OK. He does a really good job of this since before I think he even realized it. Turning down foods shouldn’t be a sad thing, everyone always feels bad. I’m proud that he doesn’t make a big deal about it. There are plenty of foods he loves that are safe for him!” – Nicole B.

"Turning down foods shouldn't be a sad thing, everyone always feels bad." - Nicole B.

7. “Continuously learning the science and chemistry of food to make a better brownie or chocolate chip cookie or pancake or (fill in the blank) because with all the substitutions needed, they’re never quite as good or stay good for long, and he knows it even though he’s never had the real thing.” – Toni K.

8. “Every time my kids try a new food, my husband and I check our watches for the time. My kids both react at two hours post ingestion, and we always make sure to be home by then. When they make it past that, we do a little family happy dance.” – Carlee H.

9. “The stress, when it first started, of having no idea what was wrong with my baby, but knowing something was wrong – including the doctors who assured me it was extended colic.” – Kristi N.

"The stress, when it first started, of having no idea what was wrong with my baby, but knowing something was wrong – including the doctors who assured me it was extended colic.” – Kristi N.

10. “For every single newish food, waiting the two-hour mark for a reaction, wiping down and cleaning everything all the time, making everything from scratch with minimal ingredients to recreate typical foods, dreading each challenge where she has to be hooked up to an IV where you have to keep feeding her even though she might go into shock.” – Ilene C.

11. “I don’t let my son go fishing (his trigger is fish) because I can’t take the chance that something silly will happen and he’ll get sick.” – Nicole O.

12. “I give safe snacks to other kids (after asking their parents) so they don’t eat or share unsafe snacks with my little one.” – Hillary M.

13. “Checking labels on every box, package and bag – even ones that have been safe in the past.” – Heidi I.

“Checking labels on every box, package and bag – even ones that have been safe in the past.” – Heidi I.

14. “I always check if other children have allergies before offering food.” – Jane R.

15. “Helicopter parenting! It’s not a choice, it’s necessary to keep my son safe.” – Lauren B.

“Helicopter parenting! It's not a choice, it's necessary to keep my son safe.” – Lauren B.

16. “We bought a camper for vacations so we can always have our kitchen and make our own food.” – Sara S.

17. “Pack a diaper bag for my almost 4-year-old so she has safe water and food wherever we go.” – Arathi C.

18. “We take our own food and milk wherever we go, even when traveling to another country!!” – Obone P.

19. “I don’t share food or drinks (even water) with my kids. Ever. I can’t take the risk of cross-contamination.” – Melissa M.

20. “We use wet wipes and wash our hands like it’s our religion.” – Ananda C.

21. “Bring little one’s food into food places with us (she’s old enough to eat anywhere we go).” – Mary W.

22. “Leave the park when we see kids eating on the play equipment.” – Jessie C.

23. “I work really hard so my son can experience a variety of fun foods. It looks like he’s eating ice cream, like a normal kid, but first I had to buy an ice cream machine, research recipes that might possibly work with his few safe foods, make a pudding out of his rice milk with flour and sugar, then cool it overnight and make the ice cream myself. Same with his bread. Same with his waffles. Same with his cookies. It’s important to me that he not miss out on what other kids are doing just because of the hand he was dealt.” – Janie D.

24. “It takes a lot of extra work, but it’s worth it. I remember making goat’s milk yogurt for my son (he is 34 now). Only thing was the other three kids liked it too – so I was always making another batch. Then his tonsillitis attacks started. With some help from a naturopath, he didn’t have to have his tonsils out. But he had to give up milk entirely.” – Dianne P.

25. “When you have FPIES to corn and multiple other foods, you can never go out to eat. No McDonald’s on a busy day, no pizza or hotdogs at a sports event. There is no stopping at a gas station for a snack on the road. You have to plan ahead for and pack every single bit of food or drink your child may need when you are away from home.” – Susie I.

"You have to plan ahead for and pack every single bit of food or drink your child may need when you are away from home.” – Susie I.

26. “I think the biggest thing that people don’t realize is the pure joy and relief I feel when I find my 2-year-old son a new safe food. That look on his face when he tries something new and says “yummy,” that’s just priceless…the happiness I feel when he has a good day and can eat until his belly is full, when I know for sure that he can’t be hungry anymore, I can sit back and breathe. And then there is the pain I feel when he loves a new food and it turns out to be a trigger and he can’t have it anymore. People don’t realize the impact on pretty much every aspect of your family life.” – Anouk F.

" People don't realize the impact on pretty much every aspect of your family life.” – Anouk F.

27. “We take nothing for granted. Our health, the ability to eat at a restaurant, grocery shopping, play dates, a fun park or playground adventure, vacations, birthday parties, school functions and holidays. Every time we leave the house, we risk our son’s health. Every time we leave him with a caregiver, it is an exercise in trust and clear communication. This syndrome is fearful isolation, and we will never take normal life for granted again.” – Carrie S.

28. “Our youngest has outgrown her FPIES now, but she reacted to all grains, rice being the worst reaction. So we didn’t let our girls play with play dough, anywhere, let alone have any in the house, so there couldn’t be any risk of her putting it in her mouth and ingesting even the tiniest amount. We also limited our outings and play dates because it was so exhausting staying vigilant every moment – there was one day when we went to a friend’s house and her kids were playing with a rice sensory tub with some having ended up on the floor. I broke out in a cold sweat and nearly burst into tears trying to figure out how to clean things up and keep my little one out of harm’s way.” – Kim B.

29. “I take a Rubbermaid container and fill it with safe snacks and give it to the teacher to keep in class at the beginning of the school year. This way when someone brings birthday treats she doesn’t feel left out. A lot of the time the teachers do popcorn and movie Friday so I keep safe popcorn in her buckets for her as well. I usually do popcorn, cookies and ring pops so she has a variety.” – Amanda C.

30. “We never go out to eat because of the FPIES and severe IgE/ANA allergies. We go to the same resort for vacation every year because it’s close to home, under an hour away and has a kitchen. We avoid any food-related gatherings like the plague because we feel bad that our son can’t eat and has to watch everyone else eat.” – Christine M.

"We avoid any food-related gatherings like the plague because we feel bad that our son can't eat and has to watch everyone else eat.” – Christine M.

31. “Leave anywhere immediately if someone appears sick with snot or a cough…snot means my son won’t drink his formula that he already barely drinks. Being sick also means we can’t continue trialing new food.” – Skylar R.

32. “I use a cover for restaurant high chairs and shopping carts. I can’t risk exposure to dust from oats or rice.” – Susan W.

33. “I make sure I have snacks and meds on me at all times just in case we are out longer than we intended to be.” – Sara T.

“I make sure I have snacks and meds on me at all times just in case we are out longer than we intended to be.” – Sara T.

Thinkstock photo via Liderina.

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The Perseverance of a Mom to a Little Girl With FPIES

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Since birth, our daughter has had challenges eating and gaining weight. At 3 months she was moved to an expensive formula that was amino acid based (no protein to digest) because she couldn’t digest protein at that time. Thankfully we had discounts for the formula and loving friends and doctors who gave us free samples to help us. When she finally got allergy tested she was 9 months old. She was allergic to corn, oat, wheat, egg, dairy, soy, all nuts. At that point she was going to be on formula for a while.

It was hard to find foods without those ingredients, but we learned and adjusted. Soon after that, she was diagnosed with food protein induced entercolitis syndrome (FPIES). It was nice to have a diagnosis, and we had a plan to move forward. She was finally gaining weight. She still was dependent on formula for a while until she hit 16 months and some of her allergies went away. Corn, oat and wheat. Dairy was more of a lactose intolerance at this point. So we could add new foods. It felt like victory!  She was eating more from the table and was growing.

She was down to one bottle a day until we went back to the specialist; her weight was down again. Back to more formula. Finally we got the news in March 2016 that we could stop the formula and just keep eating what she is eating. What a relief. So we kept doing what we thought we were suppose to be doing.

In September 2016, at her 2-year-old appointment, she’d lost again and dropped off the charts. Since we were moving and wouldn’t have insurance for three months I did my best to follow the doctor’s advice and tried to have consistent meals and eating. Family and friends so generously helped us pay for preschool.

She has been eating more and drinking more of her milk than ever before. So at this most recent weight check we were hopeful. But we learned she has fallen off the charts again both in weight and height.

We are exhausted from all this. I keep beating myself up as a mom saying, why didn’t you feed her this, why not this? But then in the car one day this week I realized there are some things I as Mom cannot control.

As moms we sometimes think it is our faults. We always seem to blame ourselves and keep running over and over the decisions in our head. Should we let them cry it out? Should we feed them fast foods? Should we let them climb on everything?

We have to give ourselves a break. We seem to compare ourselves to each other all the time. These past few months I tried my best to just enjoy the fact that our daughter has been eating good food. She is a healthy eater! I stopped thinking about her weight.

Even at moments when I am hit with disappointment, I need to focus on finding maybe a new set of doctors who will help us figure out the root of the issue. Exhaustion leads to perseverance, which leads to hope. I can’t and won’t give up on my baby girl.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by CentralITAlliance

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19 Secrets Families With FPIES Wish Others Knew

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Food protein-induced enterocolitis syndrome (FPIES) is a rare type of food allergy affecting the gastrointestinal (GI) tract. “The symptoms often include profound vomiting, diarrhea, and dehydration, which can lead to severe lethargy, change in body temperature and blood pressure,” according to The FPIES Foundation. It can be difficult to obtain a diagnosis for FPIES because unlike typical food allergies, standard allergy tests are often ineffective, and food-related symptoms are not immediate. About 60 to 90 percent of children with FPIES outgrow their allergies in the first three years of life. However, there are cases where FPIES will continue into adulthood.

The Mighty collaborated with The FPIES Foundation to ask our communities, “What’s one secret you wish others knew about caring for someone with FPIES?” Their responses reflect the social isolation and anxiety both parents and children face daily when going to school, the playground, or even friends’ homes for dinner. Families with this rare allergy hope for increased understanding, so here is a glimpse into their lives with FPIES:

1. “Even though it’s different than a traditional allergy, it’s still very serious. Some people tend to think it’s not serious or a real allergy. When your baby ends up in the ER, you know it’s serious and real!” – Casidy J.

2. “It’s not that we want to be alone and stay home. It’s the only place we feel somewhat safe and in control.” –Shannon B.

3. “The child is the true hero. My son is 8 and is FPIES to cereal grains. He is his own advocate and loves reading food labels to ensure he is going to stay healthy.” – Shavon F.

4. “My son is at the age where he’s noticing he can’t do all the same things at daycare. Sure, he only eats food from home, but he is also excluded from certain crafts, birthday celebrations, and a lot of holiday parties. He has to sit all alone if there is a messy treat or activity. When someone makes an effort to have something special for him (approved by me), it means so much.” – Diane K.

"When someone makes an effort to have something special for him, it means so much."

5. “You wonder if you’re ever going to be able to fully trust someone else, besides your spouse, to watch your child so you can have a 10-minute breather. FPIES is exhausting. It’s expensive. It feels never-ending.” – Jacie D.

6. “I wish people would understand that just because his allergies don’t require an EpiPen, it doesn’t mean they aren’t life-threatening or dangerous. FPIES is rare but real.” – Tina Y.

7. “Just because you may not ‘understand’ what a family dealing with FPIES is going through, they still need your love and support. It’s a long and oftentimes lonely road. You don’t have to get it, you just have to show kindness and love.” – Katie K.

It’s a long and oftentimes lonely road. You don’t have to get it, you just have to show kindness and love.”

8. “It’s heartbreaking to see your kid get upset because you have to leave the playground as soon as you get there because other parents let their kids eat food while running around the equipment. As an FPIES parent, you have to consider all the unknown food as a potential trigger.” – Amanda D.

As an FPIES parent, you have to consider all the unknown food as a potential trigger.

9. “Not everyone outgrows it; there is no guarantee. My 6-and-a-half-year-old and best friend’s 7-year-old still avoid FPIES triggers daily. It can be a long road!” – David T.

10. “I spend each day terrified that the tiniest of crumbs, a sip of unclean water, or a lick of a surface that has not been sanitized properly could make my baby horrendously sick and land him in the hospital yet again.” – Brittany S.

11. “I am trying to raise a child whose illness doesn’t define her, and instead what matters are all the smart, funny, silly, sassy things she does and says does. It’s difficult to have everyone else understand this and not isolate her because of it, or place negative connotations on what she can’t do or can’t eat. I try to make sure she knows she can do things her way, even through all of the things she can’t.” – Tatiana Z.

12. “As the parent, you probably know more about FPIES than most doctors and pediatricians do.” – Nicole B.

13. “It’s extremely socially isolating for both little ones and parents.” – Janine M.

It’s extremely socially isolating for both little ones and parents.

14. “Always check with a parent before offering another child food of any kind. You just never know if that seemingly harmless treat or snack could make them really sick.” – Katrina R.

15. “It is heartbreaking when your toddler asks for foods they can’t have, and not being able to accommodate their desire for new experiences.” – Mary K.

“It is heartbreaking when your toddler asks for foods they can’t have, and not being able to accommodate their desire for new experiences.”

16. “My daughter is allergic to green vegetables. I worry she’s going to have a nutrient deficiency and it will affect her growth and health.” – Tiffney G.

17. “There was a point in my daughter’s life where the only thing she could eat was white potato and coconut. Everything else sent us to the hospital. Yet each time we would meet a new doctor, we would see a look of disbelief flash across their face. Just because FPIES is an invisible illness, doesn’t make it any less real.” – Laura B.

18. “We want others to know alienating it can be. We know it’s difficult to invite us to the dinner or event because that means you’ll get a thousand questions about food, and you’d rather not have to deal with it. But it doesn’t mean we’re ungrateful for the offer.” – Heather O.

19. “Most of the time the strength and bravery to get through a day comes from our daughter. Her smiles, laughs and kisses get us all through the tough stuff. Being the parent of a child with FPIES doesn’t make you a superhero, it gives you the opportunity to raise one.” – Alliyson F.

Being the parent of a child with FPIES doesn’t make you a superhero, it gives you the opportunity to raise one.

Do you have a child with FPIES? What’s one secret you’d like others to know? Leave your comment below.

We want to hear your story. Become a Mighty contributor here.

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I Am the Mother Who Used to Think Most Allergies Were a Joke

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I used to think most allergies were a joke. I used to cringe when people wouldn’t let their kids eat something because they got a little rash around their mouth, a few patches of eczema, or a stomachache. I would think, just give it to them and their body will get used to it or stop babying them so much. I just didn’t get it. I thought it was a huge inconvenience for everyone else around them.

Horrible, right?

It’s kind of like how before someone has kids, they can be quick to judge.

I was the mom who easily judged others, and now I have become that “allergy mom.” I am the mom to a young boy who has food protein-induced enterocolitis syndrome (FPIES). He is a 2 and a half year old who can only eat 20 foods.

I am the mom whose kid will not be able to eat most snacks other kids bring to school.

I am the mom who freaks out when another kid spills Goldfish crackers all over the playground.

The mom who dreads going to any social gathering with food.

I am the mom whose child can’t eat at most restaurants.

The mom who has to bring her son’s safe food everywhere we go.

I am the mom whose child is the reason other kids will have to bring fresh fruit or store-bought snacks to school that have all the ingredients listed.

And the other parents – they don’t get it.

They don’t understand, and people might start to think that anything to do with my child’s allergies is a hassle. Until one day, you are the “allergy mom.”

And just like that, life changes.

You start to see from different eyes. I am that mom whose kid will go trick-or-treating with his brothers and sisters and not be able to eat the candy. There may be tears, and there may be tantrums. And we will get a lot of looks. Very few will understand and most will think it’s an annoyance to have a different treat option for those kids who can’t eat candy.

So I ask anyone that is giving out candy this year, and in the years to follow, to consider having a non-food treat for kids with allergies or intolerances and be a part of the Teal Pumpkin Project.

A small amount of kindness and empathy towards kids with allergies means more than you will ever know. 

We know we can “just keep him home” and not allow him to trick-or-treat with his siblings.

We don’t expect the world to bend over backwards for him, but we do believe in kindness and empathy.

We have a passion for all kids with allergies to enjoy Halloween just like every other child. 

It is my wish this year, that thousands of children with allergies all over the nation can find a few houses that make them smile. Please join the Teal Pumpkin Project and make your home on the other end of that smile.

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When Chipotle Refused to Sell Me an Avocado for My Son’s Food Allergies

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Brighton eating a banana
Brighton.

One evening, we were driving back from vacation. It was late and everyone was starving.

It is not easy for our family to stop for something to eat. Our fourth child, Brighton, can’t eat at restaurants due to cross contamination.

He has food protein-induced enterocolitis syndrome (FPIES). He was about 1.5 years old during this trip and had a handful of foods he could eat. We always bring his food with us, but with just having a few hours left in our trip, we were out of food for him.

We looked hard for a place to eat, trying to think of somewhere that would have an avocado or banana for our son. We stumbled across a Chipotle. Perfect.

We got all the kids out of the car and marched right in. After ordering everyone’s food, I asked if I could also buy an avocado.

Just one, whole avocado.

I explained that my child had severe allergies and he couldn’t eat anything there except for an avocado.

The cashier shook his head at me and said that he didn’t think he could do that.

“Please, I’ll pay $20 for just one avocado.”

I didn’t care what it cost, I just wanted my son to eat something. My eyes filled with tears as I thought about bringing all the other kids their food and having nothing for Brighton.

I could tell this young man wanted to help me.

So he got his manager.

“Please Sir, I will pay anything for one avocado. I would buy him some of your guacamole but he would get severely sick. An avocado is all he can eat.”

And… the manager said no. We then fed our other kids while my husband distracted Brighton and fed him a bottle of his special formula.

And it broke my heart.

Thankfully, this doesn’t happen everywhere.

There have been many restaurants that look at me strangely when I ask for one banana or one avocado. But they always figure out a way to ring it up and serve it to me.

Sometimes I explain the situation. Sometimes I don’t.

Sometimes they cut up his banana and bring it to him on a plate.
It seems so simple and silly, but this makes our son’s day.

He gets to eat like everyone else.

Then he looks up at them with his big dark eyes, messy hair, dimpled smile, and says thank you.

And he means it.

More than any other child.

The fact that you brought him a banana on a plate may seem meaningless to you.

You don’t know his story, but you made his day.

You don’t know that he eats the same few foods over and over.

You don’t know that there have been restaurants that have refused to sell us one banana or one avocado because it’s not an item on their menu, although they clearly have it in back.

But you did something.

You helped our son.

You made up a price. You figured out a way to ring it up.

And you served it with a smile. No questions asked.

And we thank you.

Because you just gave our little boy a real life experience to be “normal” at a restaurant.
You filled his belly with food, and you filled his heart with joy.
We hope more people and restaurants can learn from your service and kindness.

Follow this journey on Mommy’s Love Marks

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. Check out our Submit a Story page for more about our submission guidelines.

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When a Teacher's Email About My Son's Food Allergies Made Me Cry

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Young boy named Cayden eating a snack at school My son Cayden is 5 and in kindergarten. He’s no stranger to class parties
at the holidays, as he’s been in daycare and preschool since he was 2 and a half. He’s also no stranger to being excluded from these parties and from nearly every food-based activity at school because of his multiple, severe food allergies. He has a rare disorder called Food Protein Induced Enterocolitis Syndrome, or FPIES for short. Currently he has 12 known food allergies and can be allergic to any food he’s never had before. No test exists to see what he’s allergic to, other than feeding him something new and seeing if he gets sick.

I’ve become accustomed to sending every single meal, snack and dessert for him to school. He has a lunchbox half the size of his backpack for this very reason. And every time there’s a party or birthday, I send a treat box so he can have something special while the other kids eat the store-bought cupcakes and candy bars and pizzas that always seem to accompany these events.

This holiday party I was expecting to do the same, but an email from his teacher stopped me. When I read it, I started to cry.

I wanted a party for Cayden where everything is Cayden friendly. Mrs. Sheets and I are going to go out and buy Mott’s 100% apple juice original, Lucky Charms, Armour Vienna Sausage original, sugar free jello strawberry cups, and classic Lays potato chips (yellow bag). I would like for a day where Cayden won’t have to worry about what other people have and where he can have everything. If you see something that would not work please let me know!! I tried to go on by what you brought to class for him and what was on the list of approved foods. You are more than welcome top op by tomorrow or Friday or both to ensure that everything we have is approved!!

It read:

I wanted a party for Cayden where everything is Cayden friendly. Mrs. Sheets and I are going to go out and buy Mott’s 100% apple juice original, Lucky Charms, Armour Vienna Sausage original, sugar free jello strawberry cups, and classic Lays potato chips (yellow bag). I would like for a day where Cayden won’t have to worry about what other people have and where he can have everything. If you see something that would not work please let me know!! I tried to go on by what you brought to class for him and what was on the list of approved foods. You are more than welcome to pop by tomorrow or Friday or both to ensure that everything we have is approved!!

His teacher and her aide also sent notes home with the other students saying all food would be provided for the party due to food allergies in the classroom. I offered to make cupcakes so the kids would have those as well.

The party was a complete success. Cayden was able to eat everything without fear, and this mom was crying happy tears at the generosity and care of my son’s teacher. She’s made this a holiday party to remember and has set the bar high for his future teachers.

We hope our stories help you. Get more like this one by following our topics.

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