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In April, we celebrate awareness of organ and tissue donation across North America. Sign up to be a donor and you could pass on the gift of life. One donor can save up to 8 lives and affect the quality of life for 75 more.
In the US, it’s called National Donate Life Month (#NDLM), instituted by Donate Life America and its partnering organizations in 2003. Currently, nearly 124,000 Americans are waiting for transplants. It is estimated that nearly 30,000 US patients began new lives in 2015 thanks to organ transplants.
In Canada, action is focused around National Organ & Tissue Donation Awareness Week (#NOTDAW) with events happening country-wide April 18-25. Last year, over 12,000 Canadians registered to be donors in 48 hours as part of the #48in48 campaign drive. This year, the blitz starts from Monday, April 18 to Wednesday, April 20. Let’s see if we can get it to 48,000 for 2016!
It is with great sadness that we write of the loss of Janet Mary Brine on June 12, 2015. At first, Janet was known to me as ‘Eva’s mom’, since it was through 65_RedRoses that I first “met” her on film. When I later met her in the flesh, I recognized part of the spark in Eva, and where her warm, smart determination was born.
A celebration of Janet’s life will be held on Friday July 24th, 2015 at 3:30 pm – 5:30 pm at the Anvil Centre in New Westminster (777 Columbia Street). In lieu of flowers, the family requests that donations be made to Cystic Fibrosis Canada.
After the loss of Eva, Janet was a force to be reckoned with in our efforts to get 65_RedRoses out to the widest possible audiences, and to make sure that legacy of Eva, and Janet’s, story would have a long lasting impact. It’s what we still hope. We want people to sign up to be organ donors, and we know Janet in particular wanted to support CF research in Canada, and find a cure.
It was with Janet’s help that we created the #4Eva campaign, partnered with BC Transplant to get the film free to all high schools in BC, and it was Janet that brought together the team of teachers, including Stacey Brine to write the study guide and develop a workshop to go with it.
I feel honoured to have met her and gotten to know her, and on behalf of my colleague Colette, and our entire outreach team, we wish her family much love, love love.
~ Kat, Colette and the outreach team for 65_RedRoses
Of course, Janet was defined by so much more than the little window I had into her life so we want to share what her family wrote about her:
My name is Tiffany and I’m a RN that had the privilege to care for adult patients with Cystic Fibrosis.
My CF patients have always had a special place in my heart, and to this day, I continue to fight for a cure for those who can no longer fight and lost their battle with this horrible disease. One of my patients that comes to mind is Kelly. She could always brighten my day. No matter what was going on with her when she was hospitalized, she always kept a positive attitude. Unfortunately, she lost her battle at the young age of 26.
She met the love of her life, the man she would marry. On her wedding day, she didn’t feel 100%, but she was determined to make it a good day. Three days after her wedding she was hospitalized. It was my last week working on that unit. 1 month later, she took a sudden turn for the worse and was in desperate need of a lung transplant. She became top priority for a transplant and within a month, a transplant was available. Sadly, she passed away 2 weeks later. She never got to go on a honeymoon or start her life as a wife.
When I got the call, I was devastated. She had so much going for her. Even though her transplant rejected, it doesn’t keep me from encouraging others to be an organ donor. I’ve seen transplants be successful and not so successful. I know she and her family are so very thankful for the person who was an organ donor and was able to give her a little more time with friends and family. One of my biggest passions in life is to fight for a cure for CF and to encourage people to be an organ donor. I have so much compassion for my CF patients and may work with them again in the future, but for now, I want to fight for those who lost their battle and those who continue with their battle.
Former CF nurse now a ER nurse but will never stop fighting for a cure. I’m very passionate about CF and organ donation.
Blog by Bria
As April comes to an end we are reminded of Eva and the transplant campaign that started it all. April is Organ Donation Month and the time of year when we urge you to sign up and become a donor and spread the word to encourage organ and tissue donation awareness.
April 19th to 25th marks National Organ and Tissue Donation Awareness week. In Canada alone there are over 4,400 people currently waiting for a life-saving organ transplant and more than 1,600 are added to the organ wait list every year. One organ donor has the potential to save up to eight lives.
To honour this week LiveOn.ca started the #48in48 campaign to encourage 48,000 Canadians to register their decision to become an organ donor in 48 hours. Although the campaign fell short of its goal, 7,817 individuals signed up and cemented their decision to save lives. With over 90% of Canadians supporting organ donation we have reached an important crossroads.
An overwhelming percentage of the population support organ and tissue donation and agree that it is a crucial contribution to the lives of those relying on transplants there is still a lack of initiative to register and become an organ donor. If you aren’t already a registered organ donor this is the perfect occasion to become one by signing up online. It’s something quick and easy you can do to literally save the life of another human being. As National Organ Tissue and Donation Awareness Week comes to an end it is important to continue encouraging Canadians to register to become organ donors.
“Redefining the traditional scope of documentary film in an electronic age, 65_RedRoses leaves viewers with a new appreciation of life and the digital world. This personal and touching journey takes an unflinching look into the lives of Eva and her two online friends who are all battling cystic fibrosis (CF).” – CBC: The Passionate Eye
We hope you are already a registered organ donor but if not please sign up online. If you are support the movement and encourage your family and friends to spread the word and sign up this month. April is a time to reflect upon and celebrate those who have regained their lives and benefited positively from organ and tissue donation. Let’s support donors past and present and work to encourage and educate new ones!
Coming up in May is Cystic Fibrosis Awareness Month and we want to get the blog back up and active. Contact us if you have a story you would like to share or if you have an initiative or event you’d like us to know about.
Please share the #4Eva campaign! – Bria
I was proud to host the first screening of 65_RedRoses in Montreal at the McGill campus on Tuesday, October 21! I’m happy to say the event was a success and well attended. All of the funds from the event will go back into the cost of running the screening and helping to support 65_RedRoses.
In light of the recent news of Kina’s death the film becomes more relevant and the message more poignant. Five years after its initial release it is saddening to know that all three girls have passed away. It is a heartbreaking and important reminder about how critical the need for expanded research and funding for both Cystic Fibrosis and organ and tissue donation is, transplant can extend both the quality and length of life for recipients despite not being a permanent solution or cure. Although the ending was not as happy as many would have liked I hope you enjoyed the documentary and the event and were able to extract a positive message. Transplant provides the gift of life to recipients.
Eva’s story is a testament to that and she is just one of the many who have been positively impacted by transplant. Her legacy is one of continuous fortitude, endurance and resilience but transplant made it easier for her to continue doing amazing things and persevere to inspire others.
She was able to live with passion and power thanks to her new lungs and breath a little easier. Despite the saddening outcome, the quality of her live, and of transplant recipients in general, was improved thanks to a selfless act on the part of her donor to register to become and organ and tissue donor.
Here are some photos from the event. Thank you to Alison Gu who came and took photos at the event, all photo credits go to her.
Montreal friends, please spread the word about the screening being organized by our volunteer Bria in Montreal.
Come out to the first screening of the 65_RedRoses documentary at McGill!
Tuesday, October 21, 2014,8:30-10pm
Location McGill University, The William Shatner University Centre.
Check out the Facebook Event for more details!
We are deeply saddened to say that Kina passed away Tuesday afternoon. It is hard to believe how much has changed in the five years since we made the film. The time we spent with Kina’s family in Eerie while filming 65_RedRoses was so special for us. Like Eva and Meg, Kina was a strong person – Eva often referred to her as a CF Warrior. She lived life on her own terms and with an open heart. We were moved by her acceptance of people who were different, her love for animals, and the courage she had to share her story.
When we first arrived to film with Kina she had beautiful, long hair, and one day during the shoot she decided to cut it all off. She had promised a charity she would do it, and she wanted to honour that commitment. She opened up her life to our film because she promised Eva she would. If she believed in something she went for it all the way. While they were taken too soon, we are thinking of all three girls right now. We know they are finally free and breathing easy. Our sincere condolences to Kina’s family and countless friends.
Love, love, love.
~ Nimisha & Philip
As summer is ending it’s time to give a quick update on all the amazing things that have been going on with 65_RedRoses and the #4Eva campaign!
I spent my summer in Uganda volunteering with an NGO which is why our 65_RedRoses Blog has not been updated for a while but I am back now and ready to help share more CF stories. If you or someone you know has been affected by CF and wants to share their story please email me at email@example.com or contact me via the 65_RedRoses #4Eva Fan Page at https://www.facebook.com/
We also have some exciting volunteer opportunities to announce for any supporters in Montreal. If you are interested in volunteering to help plan a screening of the documentary in Montreal please contact me.
NEWS! 65_RedRoses is now available to be streamed online through the National Film Board of Canada’s Campus Subscription service.
It’s also available in video from us for a one-off screening license. If you are interested in hosting a public screening on your campus check out the “Screenings” section of the 65_RedRoses website for our screening guide, promotion tips and materials.
Finally, we want to send our congratulations to Eva’s father Bill Markvoort who raised over $77,000 for Cystic Fibrosis as a part of the GearUp4CF ride in July which is a nine day 1,200 kilometre bike ride from Vancouver to Banff.
If there is something you would like to see us blog about let us know in the comments below!
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Bria: What was it like growing up with CF? Were there limitations you encountered? If so, how did you face them?
Tara: I was very fortunate to grow up as a very healthy individual with CF. I was able to play sports and go out with friends with few limitations. I had to incorporate treatments into my day which on average took about an hour each, three times a day. I always had to remember to bring enzymes with me wherever I went so that I was able to eat. But for the most part my CF life was easily incorporated into my regular daily activities. It wasn’t until I was in grade 12 and my lungs began failing that I found CF really overtook my days. I was up to doing 6+ hours of treatments daily. I was on oxygen full time. In and out of the hospital for stays. Off and on IV medications. Slowly I went from being the healthiest CF patient in my clinic to the sickest patient in my clinic. CF began taking over my life so I was unable to do much other than focus on my medications and treatments – which isn’t much of a life – so I decided to list for a transplant.
B: If you could tell people one thing about living with and having CF what would it be?
T: I would tell them that CF robs people of many things. It takes away childhood innocence because you learn at a young age that you have to grow up and be mature about managing your treatments, medications and health. CF never takes a day off, so neither can you. It manipulates the way you think, the goals you set for your life and the dreams you create. Suddenly your dream of traveling the world takes a backseat to simply graduating from high school or university. You want to achieve normal life goals that someone without a chronic illness would consider to be a ‘given’ in life but CF starts to shape your goals. But for everything that CF can take from you, it doubles your dedication, desire and motivation to overcome and defeat the disease. You want to live one day longer, to fight and win one more battle, it overpowers the negatives of CF and you are left with an eye opening appreciation of life itself and the drive to live it to the best of your ability. This appreciation for each day is something some people will never realize no matter how long they live. A quote by Oscar Wilde that I recently found sums up this life lesson that many living with CF learn at a young age, it says “to live is the rarest thing in the world. Most people just exist.” So although CF may make day to day life challenging and difficult at times, it grants us one of the greatest gifts – a love and appreciation of life.
B: How did you feel after you received your transplant? Did it change your perspective on anything?
T: After my transplant I felt like a completely new person – as if I had been given a ‘redo’ on life. I was more energized and excited about everything and anything. I was alive and living was so much easier. My perspective on how I would carry out each day definitely changed immensely after transplant. I’ve learned to try to not dwell on hardships or struggles and to enjoy each day. I’ve started living life in a different way. The smallest things such as a phone call, a nice hot shower or a delicious home-cooked meal make me the happiest. By enjoying these things I find that each day is more exciting and wonderful so I’ve been trying to pass this outlook on to others around me. When you can realize that there is something good about everyday your life becomes richer and that’s when you really begin living.
TOMORROW – April 20th – is National Organ Donation Week! In honour of Organ Donation Week, we invited organ donors and recipients to share their story. Thank you to Jennifer and Kayla for sharing this moving story, and thank you to our #4Eva volunteer, Bria, who put together this blog!
My daughter Kayla is 24 years old and was diagnosed with Cystic Fibrosis at age 5. As a child she was very stable but when she was 12 she started having very serious gastrointestinal bleeds. Liver disease isn’t as common in people with CF in comparison to lung disease but it is a complication of Cystic Fibrosis. At the time, Kayla was still only being admitted to the hospital for “tune ups” once a year but never had severe lung issues. As her liver started to fail and the GI bleeds became more frequent there was talk about putting Kayla on the liver transplant list. Kayla was listed on the national list for a year. We kept a beeper on us and lived an hour away from the transplant center.
Kayla’s liver continued to fail while waiting for a transplant. She would throw up liters of blood at a time and required a lot of blood transfusions. It was terrifying to watch. When we were finally informed about live donation I was tested and was a match but my liver wasn’t big enough. We knew we couldn’t wait any longer and if a match wasn’t found we knew Kayla would pass away while waiting on the list. Kayla’s step father was tested and was a perfect match.
May 15, 2006, on Mother’s Day, Kayla and her father underwent surgery in Ontario. Her father donated 60% of his liver. Having both of them in surgery was scary. My husband recovered extremely well and his liver was back to normal within a few months. Kayla’s recovery was slower; she ended up back in surgery a week later due to a bile duct leak. She was extremely sick for weeks due to the anti-rejection meds but once that was straightened out she flourished. Kayla was only 16 years old. She had to be home schooled through grades 10 and 11 but she was able to go back for grade 12 to graduate with her class.