We Need a Cure!

Mom and L

What if your child could only get their nutrition from a feeding tube or by drinking a prescription formula? This is a very thought-provoking question. You probably have never been asked this question before, but I’m asking you since this week is National Eosinophilic Awareness Week.

After years of going to several different doctors, L was finally diagnosed early last year with a rare disease called Eosinophilic EsophagitisAccording to the American Academy of Allergy Asthma & Immunology, Eosinophilic Esophagitis is a recognized chronic allergic/immune condition. A  person with EoE will have inflammation of the esophagus. The esophagus is the tube that sends food from the mouth to the stomach. EoE is considered to be a chronic condition and is not outgrown. That’s why why we need a cure for our L and the many others that suffer from this horrific disease.  Children often have recurring abdominal pain, trouble swallowing or vomiting. The esophagus can narrow to the point that food gets stuck. This is called food impaction and it is a medical emergency. We have been in the emergency room several times with L because of food impactions before we took food completely out of her diet and put her on a prescription formula.

L does food trials and currently only has two safe foods, pears and sweet potatoes. Can you imagine waking up in the morning and only being able to eat the two same foods and formula? Can you imagine going to a party and watching everyone at food around you? Can you imagine walking into a restaurant and seeing all these people eat around you but you know that you are not able to eat that food? Can you imagine kids all around eating candy, ice cream cones, and/or juice but you can’t? It’s hard to imagine life like this but it is our L’s reality. We need a cure.

The CURED Foundation is a not for profit foundation dedicated to those suffering from Eosinophilic Gastrointestinal Diseases (EGID), including eosinophilic esophagitis (EoE), eosinophilic gastritis (EG), eosinophilic colitis (EC) and other eosinophilic disorders. CURED is committed to raising substantial funding to aid in research, advocating on behalf of EGID patients and their families, and working to educate and increase awareness about this complex group of diseases. 100% of  every donation to the CURED Foundation goes straight to research. Will you help spread the word and/or donate so we can see a CURE in our near future. Our family is begging and pleading for you to take this serious.

Thank you for hearing us out. My L is the strongest person I have ever met. She truly is my hero!

Great Customer Service is not Dead! {Starbucks}

Customer service can either ruin your thoughts about a business or win you over. This weekend, Starbucks won us over once again. As you know, L was trialing sweet potatoes. The great news, L has passed sweet potatoes and she is currently on day 10 of all natural chicken. We continue to give God all the glory. Our sweet girl now has two safe foods, pears and sweet potatoes. Friends, this is huge! This year is going so much better than last year. Last year was the hardest year of my life, and I cannot even imagine how L feels about last year. I gained more gray hairs, for sure.

During food trials, L has to have 100% of that food with no added ingredients unless it is an oil. During the sweet potato trial, L was in line with me at Starbucks. We both found the One Potato, Two Potato sweet potato chips brand on the shelf. The Starbucks barista told me she didn’t know of any other stores that carried this brand. She was only familiar with Starbucks carrying the product. Every Starbucks we would visit, we would buy all the bags on the shelf. This past weekend, we were in Pennsylvania and I was telling the barista at this specific Starbucks and L’s disease. She immediately went to the back and brought all the bags the store had for us.

Big Sis holding the chips

Big Sis holding the chips

This warmed our hearts so much. L grinned ear to ear when she heard this barista did this all on her own. Not many people understand L’s disease and her huge limitations on food. These sweet potato chips rock her world. Believe me, we have tried many different brands but nothing compares to the One Potato, Two Potato brand. The chips can be bought online but shipping is very expensive, so hence the reason we try to buy in store.

The art of customer service is not lost. All the baristas in this store were so kind and compassionate. You could tell they all really cared about L’s disease. Thank you baristas in Carlisle, PA. You made this family’s day!

We have exciting news!

Jen from One Moms World

This was truly the best weekend ever. We were surrounded in love with our family and enjoyed celebrating a big event. L and I will be releasing an update on our YouTube channel on Tuesday to tell you the big news. We hope you are subscribed to our channel so you will get the notification when the video goes live. God is so good and we are giving Him the glory for this great news!

Dog Therapy is the Best Medicine!

As you all know, my youngest daughter L has a rare disease. She amazes me with her strength. I’m going to be real and honest. I don’t know if I could live on a prescription formula. L shared how she deals with her chronic illness in her latest video. Hope you will take the time and watch.

Dogs are a great medicine for our sweet L. She is a huge animal lover and her heart beats very fast when she is around dogs. The love and compassion she has for dogs is amazing. Dog therapy is truly the best medicine for her. We had a big clinic day yesterday at Children’s Hospital and our friend met us at a nearby park with her dogs. This helped ease L’s anxiety and just seeing her smile ear to ear, warmed our hearts immensely.

Sissy and Teddy

In addition, on our recent trip to Florida, we stayed with family part of the trip and they have two boxers. L was over the moon during our entire stay. This picture will now be framed in her “dog” room.

Sissy and Turner

Dogs speak her language and help her cope. She can be having a bad day and our medicine is to immediately bring up dogs to her. She can sit for hours and tell you how to train a dog. Her future goal is to get a puppy, train the puppy, and have it be registered as a service dog so she can take the dog to Children’s hospitals. I feel she will accomplish this goal in the near future.

Enjoy her video and please continue praying for a cure!

We have great news…. #EosinophilicEsophagitis

Did you hear that? That was the entire family shouting with joy. Why are we shouting? You will need to watch our latest vlog as we share big news in L’s eosinophilic esophagitis journey!

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