In February 2017 our son Bradley Jr. was diagnosed with Eosinophilic esophagitis. After struggling with feeding issues since birth, with terrible reflux, to mom being on elimination diets while breastfeeding to finally having to give in and put him on an elemental formula due to what we “thought” was just food allergies. Bradley Jr. would frequently choke on food and cough while eating, refuse to eat and even cry when prompted to eat. It was blamed on him not chewing well enough, him having allergies, and even asthma…but nothing helped, nothing got better. We finally have an answer.
Eosinophilic disease is a very complicated and complex disease that depletes the body of iron and essential nutrients necessary for proper development and physical growth. In addition, the symptoms associated with this disease are painful cramping, bleeding, vomiting, choking on food, aspiration of food, polyps and more. Patients develop severe damage to their digestive tracts. Due to the lack of nourishment caused from multiple food allergies or intolerance to so many foods most people must rely on a simplified elemental based formula or feeding tube for their daily nutrition. Imagine living your daily life like this! Imagine living with this at 2 ½ years old. Being afraid to eat, feeling so hungry but knowing you might vomit if you even attempt to eat or knowing that there a good chance you will spend hours with severe stomach pain afterwards. Imagine choosing between that, or feeling hungry.
Since Bradley Jr’s diagnosis he has continued to struggle, to be unable to tolerate more and more foods and has been prescribed a daily formula that he refuses to drink enough of to supply adequate nutrition. He is losing weight and muscle mass and now spends most of his day laying in his bed, We want our son back, the crazy silly, funny dare devil that used to run and jump and cry when it rained because he couldn’t go outside to play. Bradley now either refuses to play outside all together, or askes to come back in and lay down within ten minutes of going out.
While we are receiving treatment locally, the various Dr.’s we work with are in various offices all over town. They do not collaborate and even prescribe conflicting medications and treatment plans for Bradley. They admittedly have little training and or knowledge of the disease as it is rare and relatively newly discovered. Most research is still in the clinical trial phase. Due to this, Bradley Sr., our pediatrician and myself have decided it is best for us to be referred to the Children’s Hospital in Denver, where they have an entire clinic designated to the research, study and treatment of this disease. We feel that this will provide Bradly with a better chance of getting into remission and gaining back some of the previous quality of his life.
Doing this will be very costly to us as our insurance will cover less of his treatment than they currently do locally, we will have to afford the travel there and back, hotel stays while there, medication costs, shopping for allergy friendly foods to feed him while out of town etc. As I have become a stay at home mom due to the extra care Bradley Jr. requires as well as the extra support and care of our daughter whom has her own rare genetic condition, this leaves only Bradley Sr. working. We still have all of our normal living expenses on top of these new and unforeseen costs. After speaking with Denver Hospital we were told we need to come for an entire week for our first visit. During this time a team of six Dr.’s who specialize in EoE will meet and work with us, run test and develop a treatment plan. They plan to schedule us to come as soon as possisble which may be as early as next month or the beginning of July. The estimated cost of staying six nights in Denver for hotels and food alone, not to mention the additional medical co pays seems staggering and impossible for us. However, we have FAITH that God will somehow make this possible for us as we KNOW that Bradley Jr. deserves the best care possible. We humbly ask for any support you can provide us, even if only prayers. Thank you and God bless you all.
- Michael Puckett
- Brehan Adcock
- Jennie Grimm
- Lj Beastlyness
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