Posted by Summer Katz, LMHC (Patient Advocate)
On August 13, 2020, the cystic fibrosis community lost a truly amazing treasure, and heaven gained an angel. Beverley Donelson, also known as “Grandma Bev,” passed away at the age of 87. Many lovely things have been shared about Bev online through a variety of social media outlets, and I have no doubt that the sharing will continue for a long time.
I wanted to write this blog to honor a woman who helped shape my own growth in living with CF, as well as advocacy in the cystic fibrosis community. I offer this blog as a gift to Bev’s family and loved ones.
May each of you remember her; your mom, your grandmother, your great grandmother and friend as a truly remarkable woman who gave all to her family; especially in her fight for her granddaughter Erin. We all know that she kept that love going by showering the greater CF community with her genuine compassion and hope for all of us. From the bottom of my heart, from all of us… Thank you for sharing Bev with us!
(Bev center, third row in red sweat shirt and big smile at 2016 MTJM Ormond Beach 5k CF event)
Many times, when Bev and I would get together, and certainly when another party joined in the conversation, Bev would always reminisce that “she met me when I was just 5 years old.” In my memory, I was a little bit older than that (7 or 8 years old), but nevertheless, it really was such a lovely reflection to always hear her cling to.
After I was diagnosed with CF and started obtaining my medications from the CF Pharmacy, I learned that I attended the same church as Bev in the Curry Ford area of Orlando. One particular memory with Bev was when I was 12 years old. I was recovering from a surgery and Bev came to visit me at the hospital and offered her special brand of kindness and compassion. She would read bible stories; instilling hope and sharing love, which I knew was healing me in my time of need.
I saw Bev as the host of monthly CF support groups, which I can recall attending regularly, from before I could drive probably until I started college. I remember always feeling so drawn to Bev’s positive energy that, when I needed to pick up a medication from the pharmacy, I would make time to go visit with her at the office on Colonial Drive in Orlando, Florida. We’d just sit, banter, laugh, and she’d make a variety of suggestions toward my own growth as I was learning to navigate CF as a young adult.
As I reminisce about those early years, I have no doubt that Bev helped shape my interest in the field of mental health counseling. Learning how to provide support and acknowledgment, compassion and guided confrontation, in a big way – probably came about from Bev’s empathetic guidance. Knowing that Bev’s passion came from the plight of learning about her own granddaughter’s cystic fibrosis diagnosis, I felt a genuine sense of sympathetic relatedness as well as inspiration for her ability to turn such tragedy into something that was ultimately helping so many people like myself.
When her granddaughter Erin passed away, I knew that there was a piece of Bev’s passion and hope for that best positive outcome in CF that was somewhat tabled. I saw Bev though continue to strive, through her grieving, continuing to participate in the CF community, a bit more on the sidelines, but certainly with a desire to remain involved and hopeful for those of us still in the fight.
My last in-person memories with Bev were at Christmastime when I decided to visit with her and brought a couple small ornament gifts of decorative glass angels and crosses. I was welcomed in to see that she had already decorated her home with the same items on her tree and coffee table. It truly touched my heart that I just knew what was needed and appreciated at the time of honoring Erin, as well as Bev’s participation in her faith. I will always carry these symbols with me and think of Bev.
Summer Katz (Orlando, FL)
With permission of a handful of people across the country, I have included a few messages shared by those whom have also been touched by Grandma Bev over the years below. There are no-doubt dozens or even hundreds of others’ stories from people around the country, if not all over the world – but this is the audience whom I have been able to reach.
I hope that these messages bring Bev’s family & friends some comfort and peace, and a reminder of the lasting benefits of her altruism in continuing to navigate the many trials and tribulations in life. We hope to highlight the memory of a truly amazing woman, Beverley Donelson.
Grandma Bev, we will miss you and will always carry you in our hearts as we continue to navigate this devastating disease. To Bev’s family and closest loved ones, our deepest sympathies are with you. We send our prayers and will continue to hold space for love and strength as you continue to navigate the grief and loss in your lives.
(2016 MTJM event: Bev, third row center left in red shirt behind man with both arms outstretched)
Messages and stories from patients and families across the United States:
I met Bev more than 25 years ago on Cystic-L. She and another lady (Lois) did work to launch the CF Pharmacy in Orlando and she shared freely all her knowledge about CF.
When I was staying at Disney World way back 15 years ago, Bev came and met me at my hotel and I treated her to an amazing meal at the Grand Floridian Hotel. We spent the evening talking as the Grand Floridian Orchestra played for hours in the background of the hotel lobby. We became better friends after that meeting.
Everyone knew about her granddaughter Erin. I recall Erin was married in North Carolina and Bev sent me a photo of the bride & groom. She was so proud Erin did well and got married.
And I remember when the family waited for Erin to receive her call for new lungs at UNC-Chapel Hill, NC. The first years were tremendous of a renewed life for Erin, but it was not to last.
Slowly Bev had to slow down and we both faded into our lives and lost touch. Now on Cystic-L, Laura Tillman wrote of Bev’s death. Another wonderful advocate for CF has earned her Angel wings.
I’ll never forget Grandma Bev.
Lori Morris-Hughes (Chesapeake, VA)
I am so sorry to hear of Grandma Bev’s passing. We first corresponded with her when my daughter with cf was about seven, she will be 35 in January. Grandma Bev assisted us with getting some medication we had been unable to locate from our local pharmacies. She was so upbeat and cheerful. She also put us in touch with someone who could help us out at Disney.
I finally met her in person when she attended one of our CF family days at Nemours in Jacksonville. She reminded me of one of the fairy godmothers from Cinderella! Always full of energy, positive and doing for others! Such a kind person. Keeping you and your family in our hearts and prayers.
Carol & Jeff Maxfield, Parents to 34y/o daughter w/cf
She was such an amazing woman! She was really helpful to me and my mom when I was a kid. She and her family are in my thoughts!
Alicia C. (Facebook post)
Oh my goodness! I’m so sorry to hear of Grandma Bev’s passing. She was SO helpful to me back in the days of Cystic-L. I was the new mom of a boy with CF and knew NOTHING about it. She was very helpful and loving. She was full of information, resources and compassion. She always encouraged me to be a strong advocate for my son and I remember learning as much as I could about CF under her guidance. My son is now 25 and an RN. I will never forget her! 💜
Debbie M. (Facebook post)
I’ve known Beverley for years. So sad to hear of her passing. She has done a ton for the CF community.
Andy L. (Facebook post)
So sad seeing this news. She has been wonderful to many of us in this community.
Meranda S. (Facebook post)
Prayers. Such a fine gem she was.
Elle K. (Facebook post)
In October of 1998, my husband, John, and I welcomed a beautiful baby girl. Our daughter, Rachel, was diagnosed with cystic fibrosis in July of 1999. When Rachel was around 18 months, I found some email support groups cystic-l and CF parents. One of the first people to reach out to me was “Grandma Bev.” Beverley, along with her cohorts, Marion and Hal, made the newbies all feel like we could figure it out. We were welcomed into the fold. We were encouraged. We could manage this illness while raising our children to be independent vibrant adults.
Bev was always ready with a listening ear and advice. She helped to educate us. No question was dumb. She helped us figure out how to navigate in this crazy CF world. Meds, insurance companies, any questions we had. She was open to answering or directing us to the right answer.
She was very proud of her family and her granddaughter Erin was mentioned often. Her love for her family shone through her posts.
I am on several Facebook CF groups now. One of the best things I learned from Bev, Marion and Hal was how to support other parents who are blindsided by CF with encouragement and an open heart.
I was blessed to have her as a CF mentor and I was blessed to have her as a friend.
Andrea Fitting – Mom of Rachel, 21 w/CF, Jonny 16 CF carrier and Ainsley 8 no CF (Parkside, PA)
Hi! I am so sorry for your loss!!
I have CF and am 48. I met Grandmom Bev in the early-mid 90s, when the first widely used CF communication group came about. “Cystic-l” was a listserv – basically members wrote emails that went to the entire member list (between 500-1000 ppl at various times). Within moments of reading an email asking for advice/resources, she’d be all over it.
She was so special. I know of so many people who she helped.
After HS, I had no health insurance for several years. She helped me find private grants, free prescription programs, and every possible resource out there to get me my ongoing meds like enzymes and breathing treatments/nebulizer (this was before Pulmozyme, Hypertonic saline, Inhaled TOBI or Cayston).
RIP Grandmom Bev. You were an angel among us.
Toni Marie Villines (Connecticut)
Grandma Bev reached out to me back in the early ’80s, sending me letters, enzyme containers for my pocket and information. She was such a strong support and a shoulder. She sent the CF newsletter she had, was huge with getting me connected with other adults with CF and then eventually on-line groups like Cystic-L and for those of us around a long time we were part of the “conncoll” group as well.
At the time I first connected with Grandma Bev I was in my first shocking weeks of being diagnosed “late” compared to others in my family with CF or that I knew of. I was still living in New England at the time but someone at Dartmouth had put us in touch with each other right off. I had always had health struggles from day one (mostly G.I. back in those days). I didn’t fit what I thought was a typical CF mold, not in my family or according to old text books anyway.
Grandma Bev was there for me through each step, and I learned through her example and advise to just try and be myself ….. Don’t worry about the rest, deal with what I need to in my treatment. By showing me I was not the only one out there older than 17 who was not diagnosed as a toddler? She made me feel less of an alien, less fearful. She taught me to ask questions and always advocate for myself. We stayed in touch through the years through group’s online, e-mails, occasionally calling, and of course good old snail mail for some time. lol
She was one of the first to be an emotional shoulder when I later learned one of my children also had CF. This was back before the testing was available before you start a family…..And it was before we discovered down the road that my husband carried a gene that wouldn’t have showed up in the smaller scale genetic testing done for couples these days. His was only found through a research project for gene sequences with less known mutations. She was there for me when my youngest later turned out to be positive as well and not picked up until he was 5. Through the years
If she sent a box to my two with CF with something CF related. She always included some sort of goody or book for their siblings as well, She was truly a Grandmother to everyone. My children are now adults, they literally grew up knowing exactly who I was speaking about if I said “Grandma Bev.”
She was a remarkable kind woman with a huge heart. She was an example and friend to more lives than anyone could imagine, mine included. It was an honor to have been part of her world, to witness how to embrace and treat others as we navigate. Grandma Bev will never be forgotten. Anyone who has known her kindness will carry the memory of her like a gift.
She has touched sooo many lives in her lifetime. She really was a gift to the CF community.
Kelley Garvin, 52w/CF
(2014 CF Pharmacy Exhibit at Great Strides for CF – Lake Baldwin, Orlando)
I only met Beverley in 2014, but soon saw she was a “lead-by-example,” young-at-heart lady who poured her heart & soul into her work with CF patients. Inspired by the impact of CF on her own granddaughter’s life, she rolled up her sleeves & spent decades making “a real difference” in the lives of all those she knew with CF.
Grandma Bev didn’t stand on the sidelines. She truly wanted to help these patients and she did, with a lot of hard work, determination & perseverance. Pushing through the obstacles and challenges, see achieved those “higher” results.
It’s been said that, “We rise by lifting others.” Beverley Donelson was passionate in the quest to lift the suffering of CF patients, show them & their families love & make a positive difference in each life she touched.
She even ran the Central Florida Cystic Fibrosis Support Group at Cystic Fibrosis Pharmacy, helped orchestrate the years & years of CF Education Days & the fun “Kids Day” at the events. At these & hundreds of other gatherings, she always made sure folks were both well informed and well fed! Twelve dozen donuts from Albertson’s for an Ed Day, pizzas, subs, yummy sandwiches & coffee… The list goes on!
Grandma Bev & those she worked with at Cystic Fibrosis Pharmacy always had the “personal touch.” Patients were never a number. She treated them like family.
The files at Cystic Fibrosis Pharmacy are full of notes to and from Bev to patients and providers. Below are just a few.
We will never forget her laughter, hugs, smiles & “common-sense” advice. You are forever missed Ms. Beverley!
K. Karington (CF Pharmacy, Orlando, FL)
(Oct. 2015 Lifetime Achievement Award by N. Lois Adams at CF Ed Day)
In October 2000 Bev wrote to a CF website… “… Lists, rooms, web sites are all starting up — each with a real purpose; sharing info and helping others locate that info is such a wonderful service… Thanks soooooooo much. We love ya!!”
Another 2000 note from a patient’s Mom said, “Bev, thank you for the box of CF stuff. The kids love it. They are watching the movies as I speak. They are enjoying them. I never knew they would find CF to be interesting…”
A third note (from Marion) reads, “I love the way you answer all the emails from us – it’s just so sweet and so obviously sincere. With love for you and all of yours, including that athletic granddaughter!”
October 2000 Norma from New Brunswick Canada wrote, “Hi Bev, As usual, you are there with kind and comforting words for me! You are such an important source of support and assistance to so many people; a truly devoted person. We all love you too!
In 2000 Lara wrote, “Grandmom Bev! Hi. Thank you so much for welcoming me to the family! I have enjoyed reading your posts for a while now. You are such a sweetheart and you have such an awesome attitude. You always have something to say to cheer us up/sympathize/provide support, etc…”
Kathy wrote, “Okay… you have totally made me smile. I guess this “super mama” person I am trying to be can’t happen for everything. You’ve made me feel better about this whole thing. Thanks so much for being such a great person! I can’t wait to meet you too!”
Renee from Pittsburgh wrote, “Grandmom Bev, what can I say…? I love the thoughtfulness you always show. You’re the best… Thanks for being so wonderful and supportive. We love you!”
Amanda wrote, “Hello there. Thank you Grandma Bev!!!! You are super, your support and concern is so helpful!! Thank you, thank you!!! Love & hugs”
In 1999 Maryanne from Finley, Australia wrote, “Grandma Bev, You always continue to be such an inspiration to all of us. You are never judgmental or offensive. You just continue to encourage and support every one of us and God knows at times how much we need it.
This world is full of so many hard things. Sick children, heartbroken parents, even friends that sometimes say and do hurtful things. But not you!! You always are kind and wise, not only in your words, but your actions.
We on the list are so lucky to have a friend as lovely as you. Thank you for being there for us.
June 1999 Cheka wrote, “Bev… You are such a wonderful person. I really needed that card this morning. Have had a rough couple of nights… Thank so much you angel from above.
Summer Katz, M.A., LMHC
Licensed Mental Health Counselor
Cystic Fibrosis Pharmacy Patient Advocate
Office Phone: 407-898-4427 ext. 1005 or 888-307-4427
*Disclaimer: This blog is provided for informational purposes only (including brief topic exploration or reflection) and should not be used as a substitute for professional mental health or medical treatment.