Bob Saget was incredible.
Every tribute that has been released since his death continues to make that more clear, especially this story.
As we’ve reported, one of Bob’s life missions was to help find a cure for a rare disease called scleroderma, an autoimmune disorder that involves the hardening of the skin and connective tissue. His sister Gay suffered from the illness before her death in 1996 when she was just 47. Having already worked with The Scleroderma Foundation before this tragedy, he grew more committed to ensuring no other family would have to suffer similar grief.
For years, he was an advocate for the organization, attending events and helping to raise awareness and funds for their research. But what most didn’t know was that he also reached out to families who had been personally affected by scleroderma in hopes of providing them with a greater sense of comfort.
According to TMZ, Saget struck up a particularly meaningful relationship with 9-year-old Sophie Anne, who was diagnosed with the syndrome at just 7 years old. The Full House lead first connected with the young girl via videos, in which he would offer words of encouragement, such as:
“We are going to find a cure, sending lots of love.”
But the connection continued to grow and deepen over the years. According to the girl’s parents, Martha and Jeff Seaman, Bob helped the family feel hopeful about the diagnosis. He also clearly knew that the health issue affected everyone, not just the person diagnosed. They told the outlet that the 65-year-old once sat on the phone with Sophie Anne’s sister for thirty minutes while she interviewed him for a school paper, appropriately titled, “Bob Saget: My Everyday Hero.”
Even just a few months ago, the entertainer was continuing to look out for the Seamans. While in North Carolina for a performance, he treated Martha and Jeff with complimentary tickets and meals to attend the event. They even got invited backstage after the show, which you can see HERE! How nice!
Just a few weeks before his death, the stand-up comedian highlighted Sophie Anne’s story on his Instagram page by reposting a video created for the Scleroderma Research Foundation. He captioned the clip:
“Sophie Anne is one of the reasons I will forever be on the [Scleroderma Research Foundation] Board of Directors and fight to find the cure to the disease Scleroderma that took my sister’s life.”
Check out the family’s story (below).
The actor joined the board of directors in 2003, and his passion for the cause has been made clear by almost everyone who paid tribute to him this past week.
Related: Full House Creator Jeff Franklin Explains How Bob Saget Was Actually Like Danny Tanner IRL
Reflecting on his work for the organization, Luke Evnin, the chairman, told People:
“He was very disappointed with the sophistication of the tools that were available at the time to alleviate or change the course of [his sister’s] disease, and even just ease her suffering at the end. I think that he was committed to really see[ing] that it would not happen to any other patient.”
Luke added:
“This disease is rare and, certainly back then, had relatively little common notoriety, which makes it super hard to fundraise and just attract attention. Bob really wanted to change that. He wanted people to understand how bad this was and to have an appreciation for what these patients were going through.”
After hearing how passionate Bob was about finding a cure for this mission, it’s incredible to know he was quietly going out of his way to provide as much support as possible to all those he knew were affected by it. So inspiring.
[Image via FayesVision/WENN]
The post The AMAZING Way Bob Saget Helped A 9-Year-Old Girl With Scleroderma Before His Death appeared first on Perez Hilton.