When our toddler was facing intense medical treatments, B the Difference stepped in to help. The support we received allowed us to keep our focus on Autumn instead of worrying about putting food on the table or gas in our cars. We are forever grateful!
B THE DIFFERENCE's (B the D) logo, a turtle, is a creature with whom I've identified, evidenced by posts on my blog, “The Last Leaf Gardner,” and a chapter in my book, “IT’S THE LITTLE THINGS.”
B the D was founded in October 2011 by Stephanie and Jessica Merritt to honor the memory of their brother, Brandon, and they have shared the fact that Brandon was 8 months old when he was diagnosed with Neurofibromatosis (NF).
NF, is a disease that I was born with, and my having it has impacted my life on many levels, some of which is described in my book project “Imperfect Strangers.”
Evidently Brandon never asked "Why me?" when NF compromised his ability to play sports and interact with children his age—if anything (according to his family), Brandon's physical disabilities allowed his personality to become incredibly nurturing and sensitive.
I must confess that there were times I did allow NF to restrict me, perhaps that's because I grew up in a different era.
BUT I digress...
Here is the story of how I found B the D and of how their assistance has benefited me:
I had had an accident on Friday, November 12th 2021, and sustained an injury.
The following day I went to my local CITY MD and received advice to go to the emergency room where I spent 4-5 hours undergoing X-rays which determined the type of injury I sustained.
The upshot is after spending hours in the emergency room, I was referred to an orthopedist whom I saw that following Monday (November 15). He confirmed the severity of my fracture and the need for me to have Open Reduction Internal Fixation Surgery (ORIF).
However this surgery could not be done until 11-22-2021 as I needed to go to appointments for medical and COVID clearances, which I did, and I ultimately had the procedure.
One of the after post surgery “needs” that the doctor and anesthesiologist recommended for me was to wear a pump for a period of five-six days to release opioids in increments in a safe manner, but ultimately my pump (unbeknownst to me) was cutting off my oxygen leaving me nearly unable to speak and cutting off air circulation.
The pump was originally set to be removed permanently on Thanksgiving morning and I had made arrangements for someone to help me with this, but due to the potential danger I was experiencing (inability to speak and inability to breathe) its immediate removal was mandated.
Because the pump was on my back I could not get to it easily and the doctor warned me I could rip a “proper” catheter if I did not do it exactly right.
But be that as it may, I was able to pull the device off which gave me much needed relief.
Then on 12-1-2021, two weeks after my surgery, my bandages and “proper” catheter were removed.
During one of the days following that surgery (I've lost tract of specifics), out of the blue, I received a phone call from Aisling Rice (Director of Operations at B The Difference), who had heard about my plight with Neurofibromatosis through Rosemary Anderson (mother of Gillian Anderson, the actress/NF activist and Arron Anderson her brother who died due to complications of NF) who is actively involved with a NF chapter based in the midwest.
Gillian read a portion of my writings re NF and sent me a handwritten note (I tried to include a copy of it here as it says I can add more files) but I am not able to include it (even though it's a jpeg) encouraging me me to continue with this writing project) but for whatever reason I can't add a copy of her note here.
[If anyone can tell me how to add it, please advise]
Gillian evidently told her mother, Rosemary about my endeavor as she has has read my blog posts and I am in touch with her by phone and/or email, but we have never met (she lives in Michigan, I live in NYC).
The fact that I had suffered an injury involving my arm had nothing to do with why I was contacted.
It was just serendipity, or evidence that perhaps my guardian angel was working after all... for I learned about B the D at that time and ultimately was a recipient of a generous grant to cover part of a medical need.
B the D applied monies towards an outstanding balance of a crucial dental procedure.
I was very grateful they could do this on many levels, for while I still had a balance with the dentist, the fact that B the D helped me, caused them to continue to do do the needed work even though I still did not have a zero balance.
Unfortunately, in terms of my NF, symptoms began to worsen. I experienced excruciating pain in my uninjured arm, and for months that pain was thought to be caused from the fact that I might’ve been putting strain on it in an effort to compensate for the fact that the other arm was still healing.
More months went by and I could not get relief from the pain. The orthopedist who’d operated on my injured arm ordered X-rays which ruled out any orthopedic problems, but the pain continued. Suddenly it occurred to me that “something” NF related might be causing this agony.
I truly got the run around by medical professionals and under went wrong X-rays with seemingly no end in sight.
Then once again Rosemary Anderson came to the rescue, informing me about the existence of New York City based, Dr. Yohay, an expert when it comes to Neurofibromatosis.
Through his “intercession,” I was able to have X-rays that found the cause of my pain which was the fact that I had plexiform neurofibromas on my radial nerve in my uninjured arm.
Dr. Yohay then referred me to an excellent surgeon who removed them in October of 2022 but complete healing did not take place until May of 2023.
As I type this, I’m in the process of healing from another NF-related surgical procedure which was done (this past July) to remove plexiform neurofibromas on my foot.
Describing this condition has been an exhausting (and often heartbreaking) lifetime experience (which is many years at this juncture). When I’m in vulnerable situations and do this, I think about the turtles I’ve just seen in nearby Central Park and reflect on the truism that these reptiles must stick their necks out if they ever want to get anywhere. This helps me put myself on the line and be candid re my NF.
I love that turtles are the mascot for B the D and the support they gave me with a hefty medical bill has helped me to keep my spirits up in the midst of my new NF challanges.
Hopefully one day when I’m in better shape, I will be able to make contributions to others as B the D has done for so many.
When we felt uneducated and unsupported with a diagnosis of NF1 for our 6 year old, a gift of a trip to the NF Summit from “B the Difference” helped us find community and knowledge. Since then, we have made connections and have seen great improvement in our son. Thank you for offering scholarships to people like us who would not be able to make the trip otherwise.
Imagine being homeless in the Pandemic. Not a nice thought at all. Having a child who suffers from multiple disorders due to Neurofibromatosis. My son and I was referred to BKind and they assisted by paying half of our rent for 6 months. We could not have done it without them and we will be forever thankful. I pray that one day people like us can get the help they need as well by your kind and generous donations. Thanks so much BKind you have been more than a blessing. God bless you always. My son Micah and I will always remember what you did for us.
Angels do exist! We cannot thank B The Difference enough for the much needed help that they gave to us during our families time in need. Covid has been a very tough time for us all but, our family was dealing with additional difficulties. B The Difference came in to help us when we needed them most. Because of their help, our family was able to receive the necessary needed items for our children. Words cannot express how it feels as a parent to not be able to get things that your children need. B The Difference fixed that for us and we will forever be thankful. We thank God for B The Difference.
I always look forward to volunteering every year to tend bar. Ralph, Debbie, Stephanie and Jessica are very special to this organization. I am impressed every year as it gets better and getting bigger every year. I am proud to be part of this organization and help as Brandon was very special to me and my family. Keep up the GREAT work and devotion you ALL put into this to make a difference in this world of this disease.
Proud to B part of this charity.
Denny Anderson : DA100@MSN.COM
I must say, this was the best trip me and my family ever went on. It was very well planned from beginning to end. It was just what my family needed. My son really enjoyed himself. Each day we had places to go. My son's favorite place hands down was the I-fly event. I was really nervous because there were safety guidelines we had to follow, which is sometimes challenging for him, but the instructor's attitude was so positive, as he said "Don't worry he will be fine." Our host Lindsey was awesome! Although the trip was planned because of my son, Lindsey really was great with including my daughter, and the entire family! Thanks Lindsey! Thank you Aisling for being so patient with me. You and the entire B The Difference Team were incredible! It's a trip that me and my family can't stop talking about. My son who is Autistic (non-verbal) and has NF1 types on his communication device every now and then "vacation " referring to our trip.
B the Difference was borne out of the loss of Brandon Merritt by his two sisters. I have been blessed to be friends with the Merritt family for almost twenty years and knew Brandon. He was a gentle and beautiful soul who suffered from this terrible disease. Most people don't know what it is and how devastating it is to its victims and their families. The Merritt family found a way to bring joy to others through their pain. This is a loving, personal charity that is overseen by friends and family of Brandon Merritt. This alone makes it a special charity. You can feel their genuine love and compassion for all who suffer with NF. I've been attending their annual fundraising event and in 2019, I volunteered to be a guide for a family recipient of one of the B the Difference trips. I spent 5 beautiful days in Colorado with the Rutter family. Everything was 100% paid for by the foundation and it was the perfect place for the family to forget about the surgeries and doctor's appointments. We laughed and enjoyed a glorious vacation in spectacular Colorado. Thanks to this foundation, the Rutter family received a trip of a lifetime. Thank you to all who work and give to this charity.
The work B the Difference nonprofit organization provides to families that suffer from NF is incredible. They are able to give these families a period of enjoyment and stress free relaxation. Something that is so hard for these families to experience on an everyday basis. I have volunteered for this nonprofit for years and it brings me satisfaction to know my hours are worth while. I was lucky enough to know Brandon and I know he is happy watching what this organization has done to bring awareness to NF. Keep up the good work!
My son and I were lucky enough to enjoy an unbelievable trip to Colorado Springs. Our guide Lindsay was so fun and showed us a great time!
It was a once in a life time trip! If we were not nominated for this trip by another NF family, I'm very sure we never would of seen CO in all its glory. Everyone involved were extremely nice and made the travel so easy! It is a memory we will always remember and we still talk about the trip quite often -4 years later!!
Thank you B the Difference!! We love you!!
Dianne and Sean McHale
My teenage daughter Leah has neurofibromatosis type 2 and as a result has incurred significant disabilities at such a young age. While there is still no cure for this disease, we have learned to cherish and make the most of each new day. Two years ago we were incredibly blessed to be able to go on an all expense paid trip to Florida as a family through the Brandon Merritt Foundation. My sweet daughter and her brothers had the time of their lives playing in the ocean, watching dolphins follow us while riding in a giant speedboat, visiting several unique local attractions and eating ice cream everyday. We cannot thank this amazing organization enough for carving out time and resources for us to participate in a much needed break from a stressful life. Though our B Happy trip occurred nearly two years ago, they continue to check in on us and offer support. Words are not sufficient enough to express our immense gratitude to the Brandon Merritt Foundation.
The B Happy trip was absolutely the best! It was a much needed break people without a chronic illness do not understand. To be gifted this kindof vacation was above and beyond. We were treated like royalty. We got to do and go places that we have never been able to do before. We got to take family pictures and make memories that will last forever! Not only did they cover expenses but planned every part of the trip according to our families needs and requests down to the detail. It was SO WONDERFUL to sit back and let someone else take over if only for a few days. So grateful!! ❤️