John O'Toole Support Fund

Our brother John, a caring, loving and generous sibling has been ravaged by a genetically inherited disease called Hemochromatosis (John was adopted).  It was diagnosed late in his life, and consequently has been slowly killing him since he was 11 years old (He is 59 yrs. old).  He has the genetic mutation of the HFE gene as diagnosed through a liver biopsy. If not diagnosed and treated early on in adolescence, the disease causes irreversible damage to all organs, bones, connective tissue that get blood due to the iron overload the disease causes.  The disease causes brain fogginess, chronic fatigue, irreversible liver and heart damage, diabetes, joint pain, irritability, depression, propensity for substance abuse, bouts of anger, inability to focus and a slow, painful death.   Hemochromatosis patients do not live long, healthy lives. They live depressing and painful lives and every year gets harder and harder and more painful, more painful. John has been struggling with many of these symptoms as he went undiagnosed until his middle age.  Due to his depression, John also did not share his pain and suffering with those close to him until recently.  Due to the symptoms of the disease, he has hit bottom and has been living alone and on/off the streets close to 2 years and is now living again on the streets in Gainesville FL.  He needs our help urgently!

Some information on the severity of Hemochromatosis:

Iron overload slowly damages all the systems in a patient’s body from early adolescence if not treated through phlebotomy (regular bleeding).  When John was young, little was known about this disease, and he was diagnosed with hepatitis.  Genetic Hemochromatosis is considered a rare disease that affects those genetically from Northern Europe.  It was a rare mutation in the Nordic peoples that ironically, saved populations from the Black Plague.  Those with Hemochromatosis did not die from the plague and their blood transfusions are still considered to have saved others during the Black Plague that once ravaged Europe.  John is adopted and was able to find out his biological parents and they are of Nordic descent.  

The main symptoms are based on the iron overload of key organs:
 
 - Irregular heart beat or heart attack
 - Brain functions (Fogginess, depression, and anger)
 - Arthritis (osteoarthritis, osteoporosis)
 - Cirrhosis of the liver or liver cancer
 - Gall bladder disease
 - Propensity to Substance Abuse
 - Impotence
 - Infertility
 - Hypothyroidism
 - Hypogonadism
 - Some cancers
 - Chronic joint and skeletal muscular pain
 - Diabetes

John's Brief Story

John’s early symptoms in adolescence fit the profile for Genetic Hemochromatosis. He began as a freshman in High School to experience brain fogginess, memory loss, joint pain, skeletal muscular pain, depression, fatigue, desire to drink (80% of hemochromatosis patients become alcoholics). He quit football and swimming because of all the pain that he was in during practices and events. He knew that something was wrong, but he did not tell anybody, as there was a lot going on in his family for several years and he did not want to burden others.  It was only recently that he admitted this to his closest siblings.

As John went into early adulthood, he tried hard in college, but could not focus.  He found several jobs and had two broken marriages that did not work out due to the symptoms of the then, undiagnosed Hemochromatosis.   We were able to get John a well-paying professional job in our company along with the training needed.   He did well for a couple of years, but his depression and the accompanying issues took hold and he had to quit and move on.  He lost his house, a new relationship and a career. Despite the long-term assistance/support from some family members, John remained in a vicious downward spiral.  Neither he or his family knew or could understand the source of his depression and anger.  As we re-traced people he has known from his past, where-ever he went, we found that these people would remember how he helped them out.  So, throughout his battles, he still managed and still manages to care and help others.  That is what we love about him and one of the reasons we need to help him out.

Here's an example of John's loving heart.  We knew John became recently homeless again as he was feeding himself by dumpster diving at a local McDonald's restaurant in Gainesville, FL.  The manager, saw this, took time to talk to John, and gave John a number of coupons that would allow John to get some free food at their restaurant.  John gave all the coupons to other homeless souls so that they could eat.  We know this as we tracked down the manager of the McDonalds in our search for John and we had lengthy conversations about how he knew John and talked to him.  That manager is a blessed soul that helps others that are struggling.  John also gave his last physical dollar to a homeless stranger while on his walk to the McDonalds. 

We are creating this fund to help John in several ways:

We want to provide funding to help John, a loving, sick, and proud man live off of the Gainesville streets while:

1 - We get him onto Social Security disability. This is being worked on through an official case worker, but this may take about a year.  John is a proud man; however, he is unable to work due to the damage to his body and mind from the Hemochromatosis.  He needs to stay in this area to get this done and work with his case worker.


2 - He gets the medical treatments and counseling necessary to help make the rest of his life somewhat comfortable and meaningful.  

Our overall goal is help John live the rest of his life in a less painful, a safe and hopeful environment.  We urgently need help with safe housing and living expenses for John until we can get him settled as noted above.  Once these are settled in the State of Florida, John will have options like, moving to one of his sibling’s house in another state or continuing to live in Florida.  We have been supporting him financially and emotionally as much as we can for more than 18 years. Now that we know the reasons for his struggles, we have a hopeful path forward for John.   But for now, John is living day-to-day and needs our help.

We are hoping that anyone out there that knew John or if his story resonates with you, please donate what you can, no matter how big or small.  The love will be felt and adds to the positive energy we need to surround John, our beloved brother, with.

Some websites for Hemochromatosis:

https://www.hemochromatosis.org/#overview 

http://www.irondisorders.org/Websites/idi/files/Content/854256/Family_TREE2010.pdf 

http://www.froedtertsouth.com/Services/Gastroenterology/Conditions/Hemocromatosis/

Donations

  • Charles Stock 
    • $50 
    • 24 mos
  • William Sweetnam 
    • $500 
    • 25 mos
  • Edgar Martinez 
    • $500 
    • 25 mos
  • Juan Berenguer 
    • $200 
    • 25 mos
  • Edgar Martinez 
    • $200 
    • 25 mos
See all

Organizer

Charles Stock 
Organizer
Plainfield, NH
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