Join Team Ethan….

Why support TEAM ETHAN?

https://www.generosity.com/medical-fundraising/join-team-ethan

The fact that medical insurance is using the excuse that Ethan is the only child with EB in ARUBA and therefore will not pay for his care is discriminating against a child, a human being and violates laws on local and international level when it comes to children.

The government of Aruba should step up to its responsibilities towards good and equal healthcare for everyone.

Ethan M. Geerman was born on November 11th 2015 in Aruba. Ethan is born with a rare genetic skin disorder called Epidermolysis Bullosa or commonly called EB. Patients with EB are also referred to as having Butterfly decease because of the fragility of their skin.

In reality EB is a group of disorders that affects primarily the patient’s skin by developing blisters and or tears primarily from friction or trauma. Internal organs and organ systems can also be affected by EB.

On the island of Aruba, (Population 120,000), Ethan is the only person known to be born with and have EB.

EB can have many secondary complications and the disease has different degrees of severity. Unfortunately since there is no cure, Ethan will have a lifelong need for medical care and possible surgical interventions.

Daily wound care, pain management and protective bandaging are the only care that can be provided to Ethan or children like him. Heat, dust and rough contacts with any surface or material can lead to skin tear, blisters and multiple infections.

Apart from EB, Ethan was also born with Talus Verticalis, which is a congenital deformity of the feet. End of January 2017 Ethan will undergo surgery on his right foot in Groningen, The Netherlands.

Ethan’s daily EB care includes medication, special crèmes and bandages, which are not covered by the local medical insurance in Aruba. Ethan’s mother, immediate family, friends and s cover these monthly expenses.

The moment Ethan was born he had wounds on both his feet and left knee, which might have been caused during delivery but within days he developed the first blisters on his legs and abdominal area.

Protective bandages and mittens were used the first six to eight months to prevent him from scratching himself but now that he’s older he scratches any part of his body causing the skin to rupture. Due to the heat in Aruba Ethan develops frequent blisters in his mouth and on his lips.

Ethan is a child with perfectly normal mental development and at one year old he is even taking walking steps despite his feet problems.

The ratio of EB is said to be 1:100,000, which makes him “unique” in Aruba and this is where insult is literally added to injury.

The local medical insurance company, which every Aruban citizen pays for doesn’t cover Ethan’s daily, monthly or past year expenses for medical supplies such as bandages, special crèmes and medications.

The medical insurance claims that “since he is the only case in Aruba” the medical insurance won’t cover these expenses.

Therefore this campaign is twofold. First, we want to collect as many signatures as possible to present the Aruban parliament a petition to propose and pass the “Ethan’s Law”. The law concept is currently being worked on for free by a lawyer.

This proposal is to provide medical care and protect all children born in Aruba with any form of rare diseases or conditions not currently covered by the local medical insurance or the medical insurance law.

Second, raise awareness and funds for Ethan’s ongoing care and medical bills until such time a law is passed and will cover children with rare diseases in Aruba.

We ask you to support this petition by signing it, sharing it and forwarding it to anyone you can. Visit Ethan’s campaigns and thank you for donating.

Thank you.
Shahaira R. Geerman
Ethan’s mom & TEAM Ethan