We received this note from Annabelle earlier this year. Her words inspired us to tell you about her grandfather — a story that will sound familiar to many families living with Fragile X.
In his younger days, sixty-nine-year-old Robert Stillman of Brooklyn, New York had a zest for the world around him. You might call him a renaissance man.
He was a trained scientist with a masters in chemistry and worked in drug research and development. He read the New York Times every day, and still does. He could tell you all about current events.
Every weekend, he’d be on a mountaintop somewhere in the Appalachians with his dog, Smokey, enjoying the beauty of nature. Sometimes, he’d bring along his daughter Abby Grayson, son Mark, and son-in-law Jeremy, explaining with wonder the types of rocks they’d come across. His dream was to hike all parts of the Appalachian Trail.
He had a passion for photography. Most of the shots Robert snapped were of buildings. The reason: “They didn’t move, so they were easy to take pictures of,” said Robert. Through that interest, he became a devotee of Frank Lloyd Wright’s designs. Abby and Mark could vouch for that – he talked their ears off whenever they saw Wright’s buildings.
Then one day, Abby had noticed that her father’s photographs were all a little off. They were blurry. For a while, Robert had tried to hide it from his daughter, but it was a sign that his hands were shaking every time he took a photo. They didn’t know what it was then, but a few years later they’d learn what it was called: FXTAS.
How FXTAS Affects Robert
FXTAS – fragile X-associated tremor/ataxia syndrome – is a serious neurodegenerative condition that Fragile X premutation carriers are at risk for. Abby describes it as incredibly debilitating. “FXTAS has robbed my dad of the life he loved at an early age.”
Robert was in his mid-50s when he began exhibiting symptoms of FXTAS. His writing became worse and worse. He could no longer open jars. He lost his balance to the point that he fell at least once a week. And with that, Robert had to put away his dream of walking the entire Appalachian Trail.
FXTAS also affects his cognition. He has a hard time tracking conversations. One instance that shook Abby was when her father asked for his mother, who had passed away many years ago.
For a long time, Robert lived with his son Mark, until they realized he needed to be placed in assisted living.
And Robert’s granddaughters, Annabelle and Nadine, will never know him the way Abby knew her father.
“He’ll never teach them the things he taught me,” Abby said. “It breaks my heart. And it breaks his, too.”
Annabelle, who is six years old, wanted to make a difference. In the Jewish tradition of Tzedakah, she kept a box in which she saved money for charity. On the day that it was full, Annabelle was given the task of deciding where she wanted to donate her collection.
Abby gave her a few options. “We could give it to the food bank. We could give it to research that would help Grandpa—“
“I wanna help Grandpa!” Annabelle declared. And that’s how they selected us – the National Fragile X Foundation.
Along with the donation, Annabelle wrote us the letter above (spelled by her mom, but the words are all Annabelle’s!).
It brought us to tears. Annabelle and her entire family can rest knowing that we’re putting their donation to good use.
The NFXF and the FXTAS Task Force
Research and knowledge about FXTAS is still in relatively early stages. Through our newly formed FXTAS Task Force, led by Dr. Deborah Hall, we hope to leap forward to help people like Robert. The task force will:
- Improve the Foundation’s coverage and information on FXTAS.
- Conduct research in order to develop medication to take to clinical trials.
- Organize the structure to have a clinical trial.
The National Fragile X Foundation’s mission is to help every person living with Fragile X, and that includes people living with FXTAS and the families who love them.
Give to the 2015 Annual Appeal
The NFXF relies almost entirely on financial gifts from individuals and families, and the Annual Appeal is our most significant source of funding. We ask you to join Annabelle and give generously to our year-end campaign, with the knowledge that you are helping people like Robert find treatments and eventually a cure for FXTAS and other Fragile X disorders. Thank you!