Tuesday, November 13, 2018

Guest Post: Meet Jesse Da Costa








My name is Jesse Da Costa, and on this day two years ago I proposed to the love of my life my beautiful fiancĂ© Ashley “Bea” Briggs. However, a few months after we got engaged I lost Bea due to complications from Cystic Fibrosis, she was only 29 years old. I honestly didn't know much about CF prior to her revealing to me that she had it.  After she told me I slowly started to learn all that I could about CF and how best I could support her. Unfortunately, I was only beginning to really understand the disease and trying to help her manage her health when she got really sick and ultimately passed away. 

It is my hope that by sharing my story that I can help others who are, or may be, in a similar situation. Being a Spouse to a individual with CF is not easy, CF is an isolating disease for all involved. There really is such a void when it comes to resources and support for spouses with CF. I hope as I share my story it will illustrate to others that you can take a tragedy and try to make something positive come out of it. 

The ensuing days and months after Ashley passed away were incredibly difficult and still are almost two years later, but I knew that I wanted to become active in the CF community and help in any way that I could. CF spouses are in a unique situation, and I think they can benefit from hearing about the experience of others like myself – it certainly would have been a great help to me if I had had it. Being as informed as possible about CF in general and being active in the management of your spouse’s health is incredibly important, something that I learned unfortunately a bit too late.

The one big regret that I have is that, while I was learning more about CF, I wish I had asked some of those important health questions sooner and pushed a little more. However, at the time I knew that Ashley knew more about CF than I did, and I always thought she’d be ok. I tried not to press her too much, perhaps I was also a bit afraid of knowing the answers to certain questions I had especially as I saw her begin to struggle a bit more. While it’s a regret I have, it’s also something I’ve learned to let go as unfortunately there is nothing I can do aside from sharing my experiences with others in hopes it can help someone else someday. I've fought hard to move forward with my life, as I know she'd want me to, and also knowing she'll be with me always, forever.

If you are reading this and are in a similar situation, I implore you to be persistent and ask those questions. Get involved. Ashley was forthcoming with me and had even agreed to allow me to come with her to future doctor’s appointments, but I think she had always felt like CF was her problem and wanted to deal with it herself, which meant refusing to let it govern her life or her relationships... that’s the type of remarkable person she was. As a partner of someone with CF, it’s incredibly important to be involved in the treatment process and to get informed as much as possible. And if you’re someone with CF, let your partner in and allow them to help. We want to support as much, and as best we can. Teamwork is vital to keeping everyone as healthy as possible. 

Staying involved in the Cystic Fibrosis community was also very important to me after Ashley’s passing, despite how difficult it was. I learned that people with CF have to deal with a lot of challenges on a daily basis. It was Ashley’s perseverance and zest for life that sparked something in me to help and do more. So together with Ashley’s family’s we started a non-profit organization called the Breathe for Bea Foundation.

                       
                                 

Our mission is to help make the lives of individuals and their families that are battling this life threatening disease more manageable by providing financial assistance and support, as well scholarships in her memory. We also provide hospital care packages to CF patients who have been admitted into the hospital for an extended stay and are hoping to also provide resources and tips based on our experiences. We hope that we can be a support to the CF population. 

Putting my time and energy into this Foundation really helped me through the grieving process. It allowed me to try and turn an event that was so incredibly heartbreaking, into something positive, by helping others with CF. Hearing from the people who we have helped thus far is incredibly rewarding, and I know Ashley would be so proud of what we are doing. It will never make up for her loss, but it’s fulfilling to know that we can help others who have also been affected by this terrible disease. 

Wednesday, August 8, 2018

CF MiniCon



I am really excited about the next #CFminicon on Aug 15th and I am so honored to be co chairing it with my friend Laima from LungStoryShort 

Getting a lung transplant can require a lot of preparation and planning. Whether you’re preparing, or have already had one, or just want to learn more about lung transplants this is the minicon for you.

For me living life in ‘limbo land’ and no longer being able to do the things I used to do has been quite an adjustment. As I adjust to my ‘new normals’ with my CF lungs I know a double lung transplant is in my future and I want to learn as much as I possibly can. Although transplant can be pretty daunting, I look forward to the day when my 'new normals' will be adding all the things back into my life that I miss with another pair of lungs that will be perfect for me when the time is right.

I love hearing stories of others and meeting people who are living life how it was intended to be lived with their new perfect lungs. Their stories give me hope and strength for when the time is right for me to embark on the transplant journey. Registration is live so go sign up now. 


See you soon!! Breathe out Love! Xo❤️

Saturday, August 4, 2018

Nobody Fights Alone



There are approximately 70,000 children and young adults like myself world wide that have CF. We fight day in and day out to stay as healthy as possible, our fight makes us strong!

“Maybe life isn't about avoiding the bruises. Maybe it's about collecting the scars to prove you showed up for it."

I believe life is what you make it. So make sure you keep showing up for it time and time again. Don’t give up, get back up and keep trying! Life can be frustrating whether you have CF or not, we all have struggles. So show up, collect your scars and continue to give hope to others. Show them that if you can do it so can they, you just never know who will be watching. We are all fighters in our own way. Some of us just have to fight a lil bit harder. One thing I know for certain is we are all in this fight together...Nobody fights alone! Keep fighting! Breathe out Love! Xo❤️

Monday, November 6, 2017

HUGE NEWS!! 47 and Counting!!

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and I joined the fight. 

This past weekend at NACFC the median age of survival for CF was raised to 47. This is huge news!! I have seen some mixed reviews about this in the community. I have seen both positive and negative thoughts on this and a lot of misguided information. I think more information and data from the CFF would be welcomed by both sides. 

What does raising the median age of survival mean exactly.... well it doesn't mean we all automatically live to 47 and that's it. Yes I have seen this out there. 

I for one see it as a positive and amazing stride in getting us closer to a cure. Raising the median age of survival means to me that... 

1. My lil CF kiddos have a real opportunity to live longer lives!! 

2. Newly diagnosed children of today and the future are going to have even longer lives than us diagnosed in the 70s and 80s. 

3. These parents of newly diagnosed children are going to have such a better story to tell than my parents. Their experience will still be devastating to hear but not so negative and grim.  

4. This means that these drugs and medical advancements that we all work so hard for are working and it means there are options out there. When I was diagnosed there were no drugs available. We have come so far!!! 


5. It means all our hard work and time as an older generation of CF patients and loved ones spreading awareness, participating in drug trials, and fundraising is not being wasted. 

This huge news is more of a positive win for the younger generation and I for one am completely ok with that. It's why I do what I do! 

Some of my fears that I have with this huge news is... The CFF needs to stress it's the MEDIAN age of survival. I would hate for the increase in age to deter donations. We are still losing children and young adults to CF and the momentum of fundraising, research, and clinical trials CANNOT slow down! 

There will still be so many children and young adults that do not make it to 47 having a number like that can set up people's mind for failure and that scares me. 

My whole life or when I could truly grasp the fact about CF and what that meant I knew the median age of survival was 37. When I turned 37 a year and a half ago it was such a surreal feeling. I almost felt like a huge weight in some way was lifted off my shoulders. I remember thinking to myself ok. I did it!! 


I can't help but think now that I am in for another giant fight to get to 47.. I like to have goals and I like to surpass those goals but I also need to be realistic. Having unrealistic goals is stressful for anyone. Trust me I would love to live to 90 but again I don't want to set myself up for failure. Don't get me wrong I'm ready to fight and fight so hard. 

I have tried to never let statistics keep me from living my life or dreaming the impossible. I always say keep your hopes high and dreams BIG! Numbers or statistics should never define us, I feel we are constantly proving that ever day. All we truly know is that this very moment is all we have, and that's what we need to focus on! I know that nothing is worth more than this day, right here.... right now. Fighting CF takes a village, I couldn't be more grateful for my village that has helped me get to this very moment in life, and that is also worth celebrating in my book! Breathe out Love! Xo❤️

Wednesday, May 31, 2017

We Did it! Thank You!

Thank you so much!!!! We did it!!! 



Because ALL of you are so awesome, and amazing we surpassed my goal of $3838 at 11:30 pm on my birthday. We are now at $4,596 and counting. Woop woop #38Donate The money raised goes directly to the CF Foundation and 90 cents of EVERY dollar raised goes to funding research... which is so amazing and will get us that much closer to a cure. 

Thank you for ALL your love, your support and for just being right behind me every step of the way today and everyday!! My birthday link will be live until the end of May which is CF awareness month.  http://tribute.tributecff.org/somerlove38


Thank you so very much for all your continued support. I appreciate every single one of you, you truly keep me going. I am so very blessed to be a part of ALL of your lives! 
Breathe out Love! Xo❤️


38 Donate!



38 Donate!! May is Cystic Fibrosis Month and it just so happens to be my bday month.... I don't think this is a coincidence. 

It's an exciting time in the CF community more than half the CF population is over 18 now which is unbelievably amazing, but sadly only 15% of the CF population is over the age of 40. Turning 38 that statistic hits a lil to close to home and is very sobering to me, in fact this number is not ok. 

A cure is close, but we aren't there yet! Please join me as my theme for my bday this year is 38 Donate!! I have set up a special link to take donations that will go directly to the CF Foundation and help fund research to find that sought after cure. Because let's be honest that is the best birthday gift I could ever hope for. 

https://tribute.tributecff.org/somerlove38

As I celebrate my 38th birthday I know that the odds haven't necessarily been in my favor and getting here hasn't been easy, but it has definitely been worth it!! I am filled with more hope than ever, and truly believe with my whole heart that a cure is close. 

Thank you for making my bday so special by making a bday donation in my honor and helping all of us with CF keep celebrating these milestones. I dream of the day I can celebrate my 40th bday and I will have ALL of you to thank for that. 
Breathe out Love! Xo❤️




Wednesday, February 22, 2017

Love To Breathe Award 2017

I had the honor of presenting the Love To Breathe Award at the annual Adding Tomorrows meeting. The Love To Breathe Award was established in 2007 making this year the 10th anniversary which was pretty incredible. 

The award is given to:
•someone who is passionate about Cystic Fibrosis
•someone who is out in the community raising awareness and making a difference
•someone who is known in the CF community
•someone who has the ultimate goal to make CF stand for CURE FOUND

This years Love To Breathe Award recipient was Kathleen Richards!! She lives and breathes all these qualifications. To know her is to love her. I had the pleasure of presenting with her at NACFC this last November about mentoring, little did she know she's always been a mentor to me. 



I first met Kathleen when I was 12, she has put up with me for so many years not to mention my teenage years that alone deserves an award. She has taught me all my airway clearance techniques and was the reason I came up with my own technique which I call "Somer Genics" She loves mucus and to this day she still gets so excited when I call the mucus hotline. I'm so honored and lucky to have her as a friend. 

Kathleen thank you for all you did for me and for all you do for my lil CF kiddos. You have taught us all how to breathe deep, BLAST it out, and to always keep on going! Taking this pic with these cardboard heroes seemed fitting since you're a real life hero to so many!! This award was long overdue and so well deserved. Breathe out Love! Xo❤