Congress: Please Read – My Daughter has a Rare Disease

L - Mountains

Do you see the beautiful girl in this picture? This girl is my daughter and my hero. She has been living with a rare disease and went undiagnosed for many years. Finally, she was properly diagnosed with Eosinophilic Esophagitis in early 2016. Food is her enemy and she has to survive by drinking a prescription formula, Neocate Splash. This formula keeps her alive and yet insurance companies are choosing to not cover this medical care necessity. She announced to me last week that she was afraid to die if insurance decided not to cover her formula. My husband and I will do everything in our power and might to ensure L has her formula. There are many families all across the United States facing this same struggle with trying to advocate for insurance to cover prescribed formula. Please have a heart and do what is best for all these families. Speak up and vote to pass bill H.R.2587 – Medical Nutrition Equity Act of 2017.

Why do we need this passed? To provide for the coverage of medically necessary food and vitamins for digestive and inherited metabolic disorders under Federal health programs and private health insurance, and for other purposes.

This needs to be a law in every state so insurance companies can quit denying our children the medical treatment they need to SURVIVE!

Friends, we are asking you to please contact your Representatives in your state and encourage their co-sponsorship of this important legislation, too! To find out who represents you, visit https://www.house.gov/representatives/find/.

Together we can make a difference and advocate for this bill to be passed!

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 are hoping for a cure in 2017!

hope-for-a-cure-eoe

Our matching bracelets from Keep Collection are my favorite. It is our daily reminder to never give up hope on a cure.

We survived the holiday season. I didn’t bake any traditional Christmas delights or any Christmas meals. We focused on spending time together as a family and remaining positive. We are coming up on a year of L’s initial food impaction that led us to her diagnosis of eosinophilic esophagitis.

I wasn’t quite sure how we would make it through the first year, but we did it with God’s strength, prayers, and encouragement from friends in the EoE community. Going into this health journey, my mind was swirling with so many questions. Now, I am able to help other families. We obviously do not have all the answers as L has yet to confirm her first safe food. She has her fifth scope this Thursday to determine if we can for sure say pears is a safe food. Going into this scope, I’m remaining positive that she is going to have a clean scope. L has not had any major reactions or symptoms, so we are believing this is going to be a good news scope.

Food trials are hard. You get into a safe zone of no symptoms and want to just stay there because of fear of adding new foods and the symptoms return. Our goal is to try and add more foods this year. L has tried a couple foods but didn’t really make it past day 5 or 6, so her allergist confirmed we should just stick with one food trial at a time instead of trying to double up on foods. The sad news is a endoscopy has to be used each time to confirm or deny a safe food. Hopefully with research this year, there will be an easier way to check on the esophagus. Each time L has an endoscopy, she has to be put to asleep so you can imagine her anxiety about scope days.

We will let you know how the scope goes on January 12 and figure out which food we will trial next. L has almost lived on a prescription formula to keep her alive for a year. My  husband mentioned to me tonight, he doesn’t know how she continues to drink the formula (usually 7 to 8 boxes a day). The formula does not have a great smell, but with her endurance and strength, she drinks to boxes.

I continue to say she is a such a strong and brave child!

l

Will you participate in the Teal Pumpkin Project? #FoodAllergyAwareness

As many know, L suffers every day with eosinophilic esophagitits. She amazes us with her strength. Recently, she started her own YouTube Channel to raise awareness about this disease and to help others suffering with the disease.

This Halloween season, all children deserve to have a safe and happy trick-or-treating experience. Check out L’s video about the Teal Pumpkin Project!

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