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Ethan's Medical Fund

Organized by: Holguin Agency

Holguin's Photo

THE STORY:

Ethan is an amazingly strong young man living with extraordinary circumstances. Just like other 11 year old boys he loves fishing, drawing sketches, riding his bike, video games and light saber wars with his younger brother, Liam. However, unlike typical boys his age, Ethan has been fighting for health his entire life and his fight is getting harder.

As a newborn Ethan battled a full list of terrible illnesses that include innumerable bleeding ulcers, bacterial meningitis, and failure to thrive. But a diagnosis as to the underlying cause was a mystery. At 2 ½ years old Ethan was finally diagnosed with a very rare condition called Eosinophilic Gastro-intestinal Disease. EGID or Eosinophilic Enteropathy is a very rare disorder in which his white blood cells flood and attack the digestive tract (esophagus, stomach, and colon) releasing toxins. The constant release of toxins and the damage it causes is what Ethan is fighting against. Some of the aliments associated with EGID which Ethan fights against are severe inflammation, scarring of the digestive tract, bleeding ulcers, vomiting, diarrhea, delayed gastric emptying, failure to thrive, insomnia, joint pain, stomach pain, chest pain and acid reflux that is unresponsive to medication. EGID is a difficult disease to manage, if it can be managed at all. It is a series, chronic condition and there is no cure. This past year, the balance of Ethan's health has become more complicated with the additional diagnoses of secondary Mitochondrial Dysfunction with Co Q 10 deficiency, and Connective Tissue Disorder with dysautonomia. Ethan has had many challenges recently, the most urgent being severe gastroparesis (stomach paralysis). Ethan’s condition is not expected to improve, but to become more complicated.

Ethan’s healthcare is carefully managed at Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s Hospital, one of only 3 centers in the country, with a team of specialist dedicated to research and treat this rare, often complicated disorder.

To help manage his condition, Ethan has had endoscopes with biopsies every 3 to 4 months his entire life. Ethan takes a regimen of many medications and his sole source of nutrition comes from a highly expensive medical formula via a feeding tube placed into his stomach. Unfortunately, as his disease has progressed with severe gastroparesis, his stomach is barely able to move any of his formula into his intestine. This causes pain, nausea, vomiting and he is unable to support his nutritional needs. Ethan needs to return to Cincinnati Children’s Hospital, inpatient over the Christmas Holiday, for specialized surgeries on his stomach. This medical trip is planned for Dec.17th - Dec. 27th. While surgery is vital for Ethan's quality of life and nutrition, his overall condition is not expected to improve. It is possible his intestine may also stop functioning properly. The specialists in Cincinnati are focusing on the importance of the next two years of care.

The Morris Family lives in Texas and it is VITAL that Ethan makes this medical trip over Christmas for these surgeries. It is also important that the Morris’s are able to continue with future trips for his ongoing care. The medical expenses are overwhelming. Even after insurance, the medical expenses have averaged 13,000 - $15,000 per year and the financial burden is expected to escalate and the need more urgent.

As friends of Andrew, Kristen, Ethan and Liam, we want to unite together and establish a Medical fund. We would like to help the Morris family with their ongoing medical bills, monthly co-pays for doctor visits, surgeries, prescriptions, special medical formula and tube supplies. This will also help with medical travel expenses such as airfare, car rental, gas, hotels and other related expenses. Please share their story, together we can blow right past the goal! Please make any donation(s) and show the Morris family your love, prayers and tangible support!

UPDATE (from his mom)

Ethan’s surgery over Christmas hasn’t fully accomplished the goals we hoped for. He has improved but is still having some pain, nausea, and gastroparesis. We are talking through next possible steps and another possible surgery. We continue to keep busy with homeschool and with many local appointments. Some weeks we have appointments every day. Ethan is a strong kid but things have been difficult for him. We see several local doctors here as a home base but most of them recommended continuing to coordinate care at Cincinnati Children’s Hospital where they have a better understanding of the broader picture.

We will be heading back to Cincinnati to see a team of specialist and a week of test and appointments early April and another possible trip again early May. At Cincinnati Children's Hospital in April, Ethan will see several specialties including General Surgery, Gastroenterology, Cardiology, Rheumatology, Physical Therapy, Sleep Clinic, and Psychology.


Ethan has recently started appointments with Baylor Hospital in Dallas for Oral and Maxillofacial Surgery, Periodontics and Orthodontics. They are all working together as a team to start the process of surgery and correcting some of the Oral issues that Ethan has. Most likely as a combined result of connective tissue disease and not having proper oral simulation, never developing of his jaw and oral muscles because of tube feeding. There are quite a few needs to be addressed, like non-erupting, very high, impacted adult teeth, jaw problems, damaged roots, and gum tissue problems. Although Ethan is not excited about more surgery so soon, Andrew and I are relieved to finally be able to address these things.

We continue to be amazed at what God has done with this fundraiser, the generosity of so many and the creative ideas you have found to help add to the fundraiser! Andrew and I thank all of you for being a part and sharing his story.

Every Single Donation is a meaningful gift! We see your hearts and we feel your love!

* Ethan has diagnosis of Eosinophilic Esophagitis and Eosinophilic Colitis with severe Gastroparesis, Mitochondrial Dysfunction with CoQ10 deficiency, Ehlers Danlos Connective Tissue Disease with full blown POTS/Dysautonomia. These are all considered Rare Diseases. Ethan's health is carefully managed out of state at Cincinnati Children's Hospital where they have extensive experience and a team of specialist dedicated to these diverse diagnoses.

$1,040

 

21% Raised of $5,000 Goal

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  • Friends of the Holguin Agency

    $200

  • Anonymous

    $100

  • Friends at AMM

    $50

  • Julian Griego

    $100

  • The Holguin Agency

    $500

  • Anonymous

    $10

  • John Jones

    $10

  • Alice Holguin

    $20

  • Sergio

    $50

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Organized by

Holguin Agency

This is a direct to organizer fundraiser.

Donor Comments

Sergio

Sergio

DONATION: $50

2 years ago

Alice Holguin

Alice Holguin

DONATION: $20

2 years ago

John Jones

John Jones

DONATION: $10

2 years ago

Anonymous

Anonymous

DONATION: $10

2 years ago

The Holguin Agency

The Holguin Agency

DONATION: $500

2 years ago

Julian Griego

Julian Griego

DONATION: $100

2 years ago

Friends at AMM

Friends at AMM

DONATION: $50

2 years ago

Anonymous

Anonymous

DONATION: $100

2 years ago

Friends of the Holguin Agency

Friends of the Holguin Agency

DONATION: $200

2 years ago

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