The Incredible Cranes

In these challenging economic times, it’s always good to learn from those who have suffered and rebounded—it’s about hope, faith and commitment. This is a story of how we all can learn how to live after life’s worst curveball and tragedy—losing your own offspring. As we all know as parents, that’s just not supposed to happen!!!  Ed and Barbara Crane have suffered that twice, losing two of their precious sons to a very rare and little known disease—adrenoleukodystrophy or ALD for short.

You might now know Ed by voice, as he is the deep, resonant sounding fellow every weekday morning on KFBK Newstalk 1530, where he has co-anchored the most listened to radio station in our region for the last 18 months with Amy Lewis. He and his wife Barbara came to Sacramento seeking the good life and a change of pace from New York’s Long Island. They happen to love wine, golf and of course….kids.

We are fortunate to have them in our community now and they are incredibly open and passionate about celebrating and living life to honor two of their sons—Timmy and Brian. They will be hosting a charity event called “Ed Crane’s Golf and Grape Gathering” this coming September in hopes of raising the awareness of this disease that took those sons. They have another good looking 10 year old son, PJ, who hit range balls recently with his dad and I.

Timmy was the oldest son who was born in 1987 and passed away three days short of his 11th birthday. Brian was born in 1989 and passed away in 2005. Dad will tell you, as a proud father of course, that “these guys were really the cream of the crop—handsome, well mannered and had wonderful senses of humor.” Timmy was daddy’s boy and Brian was more like his mom, but with a real dry wit.

At the age of 7, Timmy began having noticeable problems like forgetting things and exhibiting facial tics. He also started having trouble with hand-writing and concentration issues. As things worsened in school, a pediatric neurologist was suggested. He was first diagnosed with attention deficit disorder (ADD) and was placed on Ritalin. Initially, there were slight signs of progress, but in late 1997 his speech and gait were changing for the worse. After an MRI, Timmy was diagnosed with ALD.

It is a baffling disease which is ‘x’ linked, or passed on by the mother. It has two forms: child onset which is typically fatal and adult onset which is debilitating, but survivable. Boys develop the disease, girls don’t. You can learn more by visiting the website www.stopald.com.

The center for research of ALD is John Hopkins University where the boys were next evaluated. The news was devastating!! Timmy’s disease was very advanced and Brian, who was not yet showing symptoms, was carrying it, and it would be a time bomb three years later.

The only known cure is a bone marrow transplant which usually works about 10% of the time. Ed became the donor as a 5 out of 6 match at Mount Sinai hospital in New York. He recalls it as a “horrible process” as radiation and chemo were used to kill off the bad cells in Timmy and make way for the new graft. Both dad and mom concurred that watching Timmy suffer through this was “awful.”

In the process, Timmy lost his ability to talk and walk. The operation initially “took,” but then he developed a “graft versus host” disease and his body rejected the new marrow. He then became septic and died just 4 days short of his 11th birthday.

Brian watched what his brother went through and mom and dad promised him that they would not put him through that agony. Since he was not showing symptoms yet and using Lorenzo’s oil treatment, a miracle cure was hoped for. Several experimental protocols were tried and none of them worked. Ed and Barbara heartbreakingly watched their son lose his ability to walk, talk, swallow and see. AMAZINGLY, BRIAN KEPT HIS KEEN SENSE OF HUMOR THROUGH ALL THIS AND COULD LAUGH.

In 2001, hoping for a miracle, they flew with Brian to Lourdes, France. They did the whole routine there with baths, the healing prayers and vigils. They did not get the miracle they wanted, but Ed says they got a smaller one: “The strength to handle the loss of both sons and celebrate life as a family.” He also says “that because of Barbara’s fantastic care for Brian, it probably helped him live way past what was expected by 4-5 years. She devoted her entire life to him for those five years”.

Like others, I asked Ed and Barbara how they have coped with all this. Their response was twofold: First, he said that they are both strong people. “We are not the types to settle into the fetal position and suck our thumbs when life deals you such a crappy blow. We just did the best we could”, he summarized.

Secondly, while in Long Island, Ed and Barbara created a golf tournament for the Timmy and Brian Crane Foundation which ran for four years. They are now recreating such an event in late September which also benefits The First Tee of Greater Sacramento, and is called “Ed Crane’s Golf and Grape Gathering”. Details are in this magazine on the next page and also available on the KFBK, Golf & Lifestyle and First Tee websites. Come celebrate with the ‘Incredible Cranes’—Ed says “It’s about HELP—HOPE—RESEARCH—CURE—AND LIFE FOR ALL THE KIDS”.