Cure Curtis - Help save my brother

URGENT!! Please help/ share

We need to get Curtis moved in the next 24-48 hours.

Curtis has to be medically transported from Arizona to California. It costs $12,000 and this is his last hope.


Story:
Please help save my brother’s life.

 

We all love him dearly and he’s been struggling and suffering his whole life. All he wants is to live his life, spend time with his family, work hard, and be a normal person. He’s never been able to experience that.

 

When he was 9 years old he endured the death of his best friend, his 3 year old brother. On the anniversary of his brother’s death, he found out that he too was inflicted by the same rare and fatal disease. The doctors gave him only days to live. A miracle allowed him to survive.

 

He has fought a hard battle his entire life, never asking for anything except a “please try to fix me” to the doctors. Now at 38 years old he is getting tired and finding himself unable to work. He still has so much life and love in him. We, our family, need to see his smile and laugh at his corny jokes. He’s finally asking for help to get back on his feet.

 

He has always worked hard and held good jobs. He’s worked even after enduring horrible hospitalizations and horrific treatments. He hugged us and held us tight after his little brother passed way. He told funny stories to his littlest brother while he laid in a hospital bed going through a bone marrow transplant. At the time, no one was a match for a bone marrow transplant for Curtis, but he stayed strong and fought on. 

 

Please help him keep the fight, his spirit and his prognosis strong. 

 

X-linked lymphoproliferative (XLP) syndrome is a rare immunodeficiency disease that is characterized by a predilection for fatal or near-fatal Epstein-Barr virus (EBV) –induced infectious mononucleosis in childhood, subsequent hypogammaglobulinemia, and a markedly increased risk of lymphoma or other lymphoproliferative diseases.

 

This incredibly rare disease affects only one in a million males. Three of my brothers have had the disease. It is so rare, that when Curtis was diagnosed, they were unsure of how to move forward with treatment. He went through chemotherapy and spent his childhood in and out of hospitals. But he survived and is now one of the only known persons in the world living with the disease. Today, when a child is diagnosed, they go through a bone marrow transplant to try to cure the child – something my youngest brother did when he was six months old.

 

Though Curtis was able to fight the disease, he has not been cured. He spent the next several years suffering, from what the doctor’s assume are complications from XLP. When he was in his late twenties, he experienced necrosis in his feet, losing parts of his toes – causing him to use a cane to walk, and making it nearly impossible to drive or work.

 

Since then, Curtis has continued to be in and out of hospitals while trying to maintain a normal life. In one instance, he went to the Emergency Room with chest and stomach pain and was told to go home – that he simply had heartburn. After only a few hours at home, he returned to the Emergency Room – knowing that something far worse than heartburn was happening to him. It was then that he was admitted into emergency surgery to have his gallbladder out. He now has a large scar across his chest because of how quickly the doctors needed to remove his gallbladder. It was later diagnosed as a bacterial infection of his gallbladder. If he hadn’t returned to the hospital that night, he would have died.

 

Two years ago, it was discovered that he has a tumor wrapped around his carotid artery in his neck – and it needed to be removed. This is not only a medical problem (which the doctors have said that he may have been living with for 20+ years) but it makes speaking incredibly difficult. His voice has become increasingly hoarse over the past five years, making it hard for him to speak easily with doctors and his loved ones. It also makes it extremely difficult for him to raise his arm, and his shoulders are on a slant. The surgery itself could cause a massive stroke and he could die, if not done with the most skilled medical professionals.

 

As he was moving through the process to possibly prepare for surgery, the doctors discovered that he was anemic and required hospitalization and blood transfusions. During this, he endured problems with his kidneys as well and had to be put on dialysis. Ultimately, the surgery for the tumor in his neck had to be put on hold.

 

For months, Curtis was receiving blood transfusions every other day and has been going to the hospital for dialysis. He has been diagnosed with aplastic anemia. He is unable to work – he is even unable to drive himself to the doctor’s appointments, to blood transfusions, and to the hospital.

 

My brother lives in Arizona, while the rest of us (his family) live in California and Kansas. We take turns going out to see him to take care of him whenever we can.

 

Curtis is now preparing to go to Stanford to have the tumor removed from his neck. In order to cure his XLP – and hopefully the ailments that have been continuously plaguing him for 30 years – he would need to undergo a bone marrow transplant, which would happen at Stanford as well.  

 

When my brother asked me to make this page for him I was in shock – he is the last person to ask for help, even with everything that he has endured. But he has been unable to work for so long now that his disability payments are about to run out and he has to leave for Stanford for what could be three or four months. With your donations, we will be able to cover all costs of treatment, living expenses, care, transportation, etc.

 

Through it all, he has never lost his sense of humor or his strength. Hopefully with the surgery and bone marrow transplant, he will be able to get back to living his life again and get back to the things he loves – rescuing animals, caring for others, and making us all laugh and smile each and every day!

Donations

  • Vanessa Franklin 
    • $100 
    • 11 mos
  • Cindy Giammarrusco 
    • $100 
    • 11 mos
  • The Fulton Family  
    • $100 
    • 11 mos
  • Kay Ann Johnstone 
    • $100 
    • 11 mos
  • Leisa n Brenden Schwartz 
    • $100 
    • 11 mos
See all

Organizer

Stephanie Hamilton 
Organizer
Newbury Park, CA
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