Remembering President George Bush and His Links to the Rare Disease Community 

President Herbert Walker Bush passed away on Friday, November 30th at the age of 94.

News coverage of his life has reminded us all of the great legacy he leaves behind: His stellar service to this country in the Navy, the crucial role he played in shaping the post-Cold War world as president, his signing into a law a cornerstone piece of legislation that is especially relevant to our community – the Americans with Disabilities Act, and his genuine kindness and bipartisan spirit that today seems like from a bygone era.

But it’s important to note his connection to our own community here at Patient Worthy – and it’s worthing discussing a little, in his honor and in honor of those who suffer from rare conditions.

Vascular Parkinsonism

The official cause of death of the 41st president was vascular parkinsonism, a rare form of atypical parkinsonism in which parkinsonian symptoms (slow movements, tremor, difficulty with walking and balance, stiffness and rigidity) are produced by one or more small strokes, rather than by gradual loss of nerve cells as seen in the more typical neurodegenerative Parkinson’s disease.

President Bush’s battle with vascular parkinsonism robbed him of his ability to walk, and in recent years made it increasingly difficult for him to speak more than a few words at a time.

In a 2012 interview with Parade magazine, the former president said:

“It just affects the legs. It’s not painful. You tell your legs to move and they don’t move. It’s strange, but if you have to have some bad-sounding disease, this is a good one to get.”

And he certainly lived by those words and optimism. Although he could no longer use his legs, former-President Bush celebrated his 90th birthday by making a tandem parachute jump — something he would often do on his own during past birthdays.

About a week after leaving the hospital in January 2017, he attended the Super Bowl in Houston, performing the coin toss with his wife Barbara at his side.


Something that often doesn’t get reported about the Bush family is that they lost their first daughter to leukemia.

Robin, born Pauline Robinson Bush in 1949, was George and Barbara Bush’s second child (after former president George W. Bush). She died in 1953 of leukemia, just months after being diagnosed during a time when leukemia was still poorly understood and of course resources and support networks weren’t available to patients and their families.

For both the president and former First Lady Barbara (who passed away earlier this year), this was a devastating loss so early in their family (they would go on to have four more children), and clearly helped to form their unique sense of empathy and kindness.

Below is an excerpt of a letter President Bush wrote to his mother circa 1958, five years after Robin’s death:

“We need some starched crisp frocks to go with all our torn-kneed blue jeans and helmets. We need some soft blond hair to offset those crew cuts. We need a doll house to stand firm against our forts and rackets and thousand baseball cards… We need a little one who can kiss without leaving egg or jam or gum. We need a girl. We had one once. She’d fight and cry and play and make her way just like the rest but there was about her a certain softness. She was patient. Her hugs were just a little less wiggly. But she is still with us. We need her and yet we have her. We can’t touch her and yet we can feel her. We hope she’ll stay in our house for a long, long time  “

Click here for more about this wonderful letter.


And the death of their young daughter prompted the Bushes to found the Bright Star Foundation benefiting leukemia research, while the Robin Bush Child and Adolescent Center at MD Anderson in Houston was named in Bush’s honor in 2004.

So as the president is laid to rest this week and as this country remembers his remarkable legacy, let’s also remember the impact he has had on rare disease awareness.

We wish peace to the Bush family and others affected by this loss.


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