Help Nicole Get the Treatments She Needs
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Cystic Fibrosis is the number 1 fatal genetic disease, there is no cure.
My friend has Cystic Fibrosis, among a laundry list of other conditions and illnesses and I would like to introduce you to her and tell you a little bit of her story and what her family has been going through.
Her name is Nicole Stringer, shes 27 years old, and she is married to her wonderful husband Ben (7 years together, 5 married) they have 2 fur babies and they live in the Okanagan.
Nicole would tell you that for most of her life her CF was actually pretty mild. If you didn't already know that Nicole was sick, just looking at her you never would have guessed. I remember meeting her in a time where I could really use a friend and she showed up for me. She was bubbly and goofy and not afraid to just put herself out there. I had no idea until she told me.
She grew up living a pretty normal life. Her parents never wanted her to feel different, so they fought hard to keep her life as normal as her older brothers and twin sisters. She was very athletic growing up, playing softball, running track, being outside and being active was her happy place.
A couple months after Ben and Nicole got married in 2012, that's when everything about Nicoles health changed. In September that year Nicole spent 8 weeks in the hospital due to a undiagnosed heart problem that quickly turned into multiple lung infections, and it just kept going from there. Since then Nicoles health has never been the same. She went from living a normal carefree life to being in and out of the hospital almost monthly, being on strong antibiotics that only caused more harm then good, having her lung function drop by 50% overnight. As hard as she has tried to regain some of her health back, she has only found more problems. Due to being on such strong antibiotics for most of her life, Nicole has developed drug resistance to all but 2 IV meds that can help keep her lung infections at bay. These meds no longer help Nicole get better, they only (very rarely) help keep things from getting worse... but even that is a long stretch now.
Nicoles health can be summed up in a couple words "very complicated". Her Drs struggle with finding therapies that will help, they don't know why her health seems to be in a steady (and fast) decline. Nicole has said to me a lot over the last few months that she no longer has a quality of life. Shes living for her family and friends, but besides that, it's hard for her to get out of bed most days. She's a fighter, but when you go from living a pretty normal life with a chronic illness, to not only feeling that illness in every inch of your body, it can be hard some days.
That's what brings us here. Currently Nicole is pretty maxed out on medications she can safely take. Back in November Nicole was scrolling through FB when she saw an article about another CF patient, in this article it was talking about how much this persons health had declined (much like Nicoles) actually she said that when she was reading that article she said it was like reading a page about her life. Nicole and this patient were living almost the same sick life. As she kept reading, the article started talking about this new therapy that this patient was given, and from this therapy the patient pretty much got her life back. When I say "new therapy" it's actually one of the oldest therapies out there. It's called Phage Therapy. See back before there was common medicine, Phage Therapy was what the Drs used to treat their patients.
Phage Therapy is one of the coolest things I have ever learned about. I highly suggest that you all take some time and do some research on your own, because there is so much good about this therapy, and it would take me all day to write the benefits it has for people.
After finishing the article, at the bottom it sited the Dr who made this therapy for the patient, and Nicole thought "what the hell? Maybe I should write this Dr, explain my case and see what happens?" 11 days after Nicole sent that email, she heard back! It was all so exciting, but then she found out that Phage can not come into Canada, and this Dr and his team work out of Yale Uni in New Haven. Even after learning this news Nicole didn't let that stop her.
She presented this therapy to her CF Drs in Canada, she talked quite a bit with the Dr and the team over at Yale, and from November- May, because Nicole didn't give up, she got the OK from everyone to fly down and do this new treatment.
In May Nicole and her mom flew down to New Haven, met the Dr Nicole had been talking with for months and months, and she got her phage! The treatment was 7 days long, and because Phage can not cross the boarder, Nicole and her mom had to stay down in New haven for over a week. Nicole and her parents had to fund the whole trip. It added up very fast. But, when it comes to health, this family will do anything to make things happen.
After Nicole did the treatment, came back to Canada, everything was looking great! Due to unforeseen health problems, Nicoles body rejected the Phage a month or so after the treatment, and Nicole became very sick. No one could have predicted what happened next, it wasn't the Phage not working, it was Nicoles body rejecting it. After months of Nicole being sick, her Drs finally figured out what happened and why her body rejected the Phage. Nicole has spent the whole summer very sick, in the hospital trying to get back to a more stable level of living. Besides figuring out why her body rejected the Phage and correcting that part in her, she hasn't been able to get much better. With a lot of thinking, the choice was made for Nicole to go back down to Yale and do Phage round 2, now with all of the info that caused her body to first reject the phage, and more understanding of her lung infections, they are all hoping instead of treating just 1 infection, that this time they can go after her 2 major ones.
This trip was pricey before, and it's pricey now. Nicole doesn't want to lean on her family for funding again (of course they are helping) but they just can't do it all this time. Nicoles last hospital admission did not go well, and her husband ended up having to take a bit of time off of work to be with her. Her CF hospital is 4 hours away from home, so whenever she's in, it's expensive, then adding her husband down there... It's just been a very hospital heavy few years, and this family has finally asked for help. I have offered Nicole many times to do this for her over the last year or so... but she didn't want to impose. Now? She's asking for help. This took a lot for her to do, and I think if anyone deserves a little help, it's her. She is seriously one of the brightest lights to come in my life and I wish I could help in all of the ways but I’m hoping this can help her and her family. I want her to be able to focus on her health and not the heavy burden this has put on finances.
She is set to go down in November. Please if you can, help me try and make this process as stress free as possible.
I hope her story touched you in some way. Anything helps.
Thank you.
-Sky
My friend has Cystic Fibrosis, among a laundry list of other conditions and illnesses and I would like to introduce you to her and tell you a little bit of her story and what her family has been going through.
Her name is Nicole Stringer, shes 27 years old, and she is married to her wonderful husband Ben (7 years together, 5 married) they have 2 fur babies and they live in the Okanagan.
Nicole would tell you that for most of her life her CF was actually pretty mild. If you didn't already know that Nicole was sick, just looking at her you never would have guessed. I remember meeting her in a time where I could really use a friend and she showed up for me. She was bubbly and goofy and not afraid to just put herself out there. I had no idea until she told me.
She grew up living a pretty normal life. Her parents never wanted her to feel different, so they fought hard to keep her life as normal as her older brothers and twin sisters. She was very athletic growing up, playing softball, running track, being outside and being active was her happy place.
A couple months after Ben and Nicole got married in 2012, that's when everything about Nicoles health changed. In September that year Nicole spent 8 weeks in the hospital due to a undiagnosed heart problem that quickly turned into multiple lung infections, and it just kept going from there. Since then Nicoles health has never been the same. She went from living a normal carefree life to being in and out of the hospital almost monthly, being on strong antibiotics that only caused more harm then good, having her lung function drop by 50% overnight. As hard as she has tried to regain some of her health back, she has only found more problems. Due to being on such strong antibiotics for most of her life, Nicole has developed drug resistance to all but 2 IV meds that can help keep her lung infections at bay. These meds no longer help Nicole get better, they only (very rarely) help keep things from getting worse... but even that is a long stretch now.
Nicoles health can be summed up in a couple words "very complicated". Her Drs struggle with finding therapies that will help, they don't know why her health seems to be in a steady (and fast) decline. Nicole has said to me a lot over the last few months that she no longer has a quality of life. Shes living for her family and friends, but besides that, it's hard for her to get out of bed most days. She's a fighter, but when you go from living a pretty normal life with a chronic illness, to not only feeling that illness in every inch of your body, it can be hard some days.
That's what brings us here. Currently Nicole is pretty maxed out on medications she can safely take. Back in November Nicole was scrolling through FB when she saw an article about another CF patient, in this article it was talking about how much this persons health had declined (much like Nicoles) actually she said that when she was reading that article she said it was like reading a page about her life. Nicole and this patient were living almost the same sick life. As she kept reading, the article started talking about this new therapy that this patient was given, and from this therapy the patient pretty much got her life back. When I say "new therapy" it's actually one of the oldest therapies out there. It's called Phage Therapy. See back before there was common medicine, Phage Therapy was what the Drs used to treat their patients.
Phage Therapy is one of the coolest things I have ever learned about. I highly suggest that you all take some time and do some research on your own, because there is so much good about this therapy, and it would take me all day to write the benefits it has for people.
After finishing the article, at the bottom it sited the Dr who made this therapy for the patient, and Nicole thought "what the hell? Maybe I should write this Dr, explain my case and see what happens?" 11 days after Nicole sent that email, she heard back! It was all so exciting, but then she found out that Phage can not come into Canada, and this Dr and his team work out of Yale Uni in New Haven. Even after learning this news Nicole didn't let that stop her.
She presented this therapy to her CF Drs in Canada, she talked quite a bit with the Dr and the team over at Yale, and from November- May, because Nicole didn't give up, she got the OK from everyone to fly down and do this new treatment.
In May Nicole and her mom flew down to New Haven, met the Dr Nicole had been talking with for months and months, and she got her phage! The treatment was 7 days long, and because Phage can not cross the boarder, Nicole and her mom had to stay down in New haven for over a week. Nicole and her parents had to fund the whole trip. It added up very fast. But, when it comes to health, this family will do anything to make things happen.
After Nicole did the treatment, came back to Canada, everything was looking great! Due to unforeseen health problems, Nicoles body rejected the Phage a month or so after the treatment, and Nicole became very sick. No one could have predicted what happened next, it wasn't the Phage not working, it was Nicoles body rejecting it. After months of Nicole being sick, her Drs finally figured out what happened and why her body rejected the Phage. Nicole has spent the whole summer very sick, in the hospital trying to get back to a more stable level of living. Besides figuring out why her body rejected the Phage and correcting that part in her, she hasn't been able to get much better. With a lot of thinking, the choice was made for Nicole to go back down to Yale and do Phage round 2, now with all of the info that caused her body to first reject the phage, and more understanding of her lung infections, they are all hoping instead of treating just 1 infection, that this time they can go after her 2 major ones.
This trip was pricey before, and it's pricey now. Nicole doesn't want to lean on her family for funding again (of course they are helping) but they just can't do it all this time. Nicoles last hospital admission did not go well, and her husband ended up having to take a bit of time off of work to be with her. Her CF hospital is 4 hours away from home, so whenever she's in, it's expensive, then adding her husband down there... It's just been a very hospital heavy few years, and this family has finally asked for help. I have offered Nicole many times to do this for her over the last year or so... but she didn't want to impose. Now? She's asking for help. This took a lot for her to do, and I think if anyone deserves a little help, it's her. She is seriously one of the brightest lights to come in my life and I wish I could help in all of the ways but I’m hoping this can help her and her family. I want her to be able to focus on her health and not the heavy burden this has put on finances.
She is set to go down in November. Please if you can, help me try and make this process as stress free as possible.
I hope her story touched you in some way. Anything helps.
Thank you.
-Sky
Organizer
Sky Edwards
Organizer
Westbank, BC
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