Hurler MPS1 is a rare genetic disorder.

A Normal Pregnancy

Like any expecting couple, my husband and I were thrilled when we first found out that I was pregnant, but nine months after our first child was born, we found ourselves in uncharted territory. Hurlers MPS1...a diagnosis that was completely foreign to me until it walked right into my life. We soon found ourselves spending 111 consecutive days in the hospital while we fought for our daughter's life.

 

Hurler MPS1 is a rare genetic disease, part of a larger group of "Orphan Diseases", so named because of their rarity, and the subsequent disinterest that drug companies take in treating them.

 

Put simply, a Hurler patient lacks specific enzymes that rid the body of "junk." Without them, the "junk" builds up and causes widespread damage to every major system. 

 

Thankfully, there are options to extend life expectancy, and more importantly, there is hope for a cure.

 

That is why the Kennedy Ladd Foundation exists. We are blessed because our daughter is home. Not healed, not promised a long life, but she is home, and that is more than we can say for the many friends that we made in the hospital. While the Kennedy Ladd Foundation was founded due to Hurlers, our long-term goal is to help all genetic illnesses.

 

I know it may seem daunting, but you, every one of you can make a difference. Even if money is tight, your involvement can make a difference in the life of a child. Please check out our "Make A Difference" page for more information on how you can get involved.

 

- Allie Ladd, mother of 2 beautiful kids who are both beating Hurler one day at a time.