Take the inspiring story of Alex O. for example. At one point, he was an extremely happy and active young boy who loved nothing more than playing all types of sports. Football was his favorite, though. He also had a strong faith, always taking time to pray before meals and bedtime.

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During his kindergarten year, Alex began having trouble concentrating and often became agitated. At first, it seemed harmless and his teacher recommended he be tested for ADHD. He was taking medications for this diagnosis, but then started having very adverse reactions and his parents knew something wasn’t right. A CAT scan was finally taken to reveal swelling in the white matter of Alex’s brain. Ultimately, the diagnosis revealed he had ALD (adrenomyeloneuropathy is the clinical name), which affects 1 out of 17,000 boys.

When his parents learned that Alex had only 1-2 years left to live, it was crushing. However, Alex kept remarkably positive spirits by holding strong in his faith. A radical decision was made to conduct a bone marrow stem cell transplant. The first attempt failed, but they tried again and the second transplant was a success. It should extend Alex’s life by an additional 5-10 years, which is hopefully long enough to find a cure. Alex is now blind, deaf and confined to a wheelchair after the disease and severe treatments took their toll.

As Alex said before the transplants, he knew there “was a chance I might not walk, I might not talk, but at least I’ll be alive.”

Chive Charities heard about Alex’s story and started a Chive Fund to raise money for a grant that would help his family. Over $66,000 was granted and they were able to purchase a new Dodge Caravan that is ADA accessible and has an in-floor conversion. It allows him to travel comfortably wherever the family goes. His mom, Clarissa is ever grateful for Chive Charities involvement and is using her family’s experience as an opportunity to help other boys diagnose and fight ALD before it is too late.

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Only two states (New York and Tennessee) currently require ALD tests to be performed at birth, even though the test costs just $1.50 to administer and the disease can be identified immediately. Clarissa and her family are fighting for these tests to be administered in all 50 states, so that treatments can be done earlier and other families don’t have to go through what Alex’s has.

Click here to read more about Alex’s story or visit the Chive Fund to donate to other Chive Charites. Also, write your congressman or congresswoman to request ALD testing become standard in your state.

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