Frank and Barbara Ildebrando began dating on Barbara’s 16th birthday and would have been married for 48 years this May. They began their life together in New York, and in 1969 they moved to Texas and had three children – two boys and a girl.
In May 2014, Barbara first began showing symptoms of ALS. She and her husband went to the doctor, and when the doctor asked if Barbara had trouble lifting her legs, she said yes – a surprise to Frank.
Every June, Frank and Barbara would go to Hawaii together. This particular summer, Frank noticed that Barbara was tired a lot and had trouble walking while on their trip. When they returned home, she had more trouble walking and had begun losing a lot of weight.
Frank and Barbara saw several doctors for the next five months. They visited cardiologists and pulmonologists – one doctor after another, trying to figure out why she was weak.
Barbara also had dystonia, a nerve disorder that contracts muscles in the body, causing you to become crippled. Because of this, Barbara received botox shots and saw a neurologist regularly. After Frank got frustrated with the lack of answers, he called her neurologist at the Baylor College of Medicine, and in November 2014, Barbara was diagnosed with ALS.
Barbara quickly got progressively worse. She used a walker and transfer chair, and later, a power wheelchair. Early on, she’d decided that she didn’t want to take any steps to prolong her life, so she chose not to get a feeding tube, tracheotomy or breathing devices. After a bout with pneumonia, Frank urged her to at least get an oxygen machine to help her sleep.
“We’d had a lot of plans to travel, which we obviously never got to do,” Frank said. “Barbara was reluctant to get away from the house and travel.”
On June 13, 2015, Barbara passed away in the comfort of her home.
“As much as I knew what was going to happen, I was still surprised when it did,” Frank recalled.
Barbara was an extremely generous person. She’d often meet strangers, connect with them immediately, and do things for them. She would frequently ask her husband to go down to the bank and get $500. Oftentimes, Frank didn’t know where that money went, but he knew that anyone who came into the house would always leave with more money than they came with.
“If I had to say what Barbara’s cause in life was, it was generosity,” Frank said. “She just wanted to help.”
After Barbara passed, Frank often confided in a friend who lost his daughter in the September 11 attacks. He asked his friend what he should do to remember Barbara, and his friend replied, “Do something for her.”
Frank began to consider creating a foundation in his wife’s memory, but after consulting with his lawyer, he decided to give $50,000 annually to the ALS Association. He wanted his donation to be used to help people and to help families. He has designated $25,000 to go to the Texas Chapter’s general grant program, which provides $500 grants to 100 people with ALS twice a year to help alleviate ALS-related expenses. Frank designated the other $25,000 for the equipment loan program, through which the Texas Chapter loans medical equipment free of charge to people with ALS. This equipment costs from $5,000-$25,000.
“I wish I could show her what I’m doing,” Frank says. “Because I think she would’ve liked it. She would’ve wanted to help as much as she could.”