My name is Ned Cancelmo. Our extended family of 28 has been at

risk for HD since our Grandmother was diagnosed and died in 1961.

Nanny had four sons, two of whom (including my dad), suffered

and died from Huntington’s. In our immediate family of six, my

youngest brother has been diagnosed and lives in a care facility in

Massachusetts. His 12-year-old daughter has been diagnosed with

Juvenile HD and is showing visible signs of the disease. My other

siblings are all at-risk. In my uncle’s family of six children, three have

been diagnosed.

 

In 2005 my wife, Mary Claire and I were strongly convinced that I had

Huntington’s and went to be tested for the gene. We fully expected a

positive result, and had been praying for a long time for the graces we

would need to deal with the news and the reality it brought with it.

On the day we went to get the results, Mary Claire was poignantly

reminded of the Old Testament story of Abraham. Remember

when God asked Abraham to sacrifice his beloved only son, Isaac

on the mountain? And Abraham had the faith to believe and obey

whatever was the will of God, so he took Isaac up to the mountaintop

and was just about to sacrifice him, when an angel stayed his hand.

Similarly, we went to Newark, fully accepting this cross to bear and

believing that God would make something good of it, when at the

very last minute (in the conference room at the hospital) an angel (Dr.

McCormack) stayed the blow by telling me I had tested negative. I

still get overwhelmed with emotion even as I type this 7 years later.

You can imagine what the phone calls to our children were like!! Our

son, Peter couldn’t wait to tell his fiance Cesilia that they could have

babies, with no moral issues or dilemmas to face. Our daughter, Amy

started sobbing and we weren’t sure if she would ever stop.

Both our kids actually thought they had HD themselves, constantly

imagining every misstep to be symptomatic.

 

So… I know you share our joy and thank you for that. I have sold

my business and retired to enjoy our “new” life. We were given a

great gift and one of my goals now is to be more helpful to, and more

knowledgeable for HD patients and their families.

 

I have joined the Board of New Jersey Chapter of HDSA, become

an HD advocate on Capitol Hill, and joined both the National

Development Committee for HD and the HD Diplomat Program. The

more I become involved and the more horrific family stories I am told,

the more I am resolved to help the patients and families.

 

Someday soon , I imagine being able to tell my brothers and sisters,

nieces and nephews, aunts and uncles, cousins and all the families who

are living and dying with this horrible disease, that a cure has been

found, and that angel has stayed the blow for them as well.

 

           
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