Tag Archives: cystic fibrosis

Tricia

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Hi,

Someone wrote the following comment on my blog:

Can you give us an update on Tricia? Nate stopped the blog about a month ago, I continue to pray for Tricia, but frankly, it’s frustrating to follow someone’s situation and care so much, and then receive no updates or information. Please let us know how Tricia is doing, and what the doctors have decided.

First of all, as much as I understand the frustration you might feel not knowing news of someone you care about…remember that the Lawrensons (as are everyone else) entitled to a private life. I do not know the Lawrensons personally, though I know people who have met them. Like many others I have ‘got to know them’ online from when Tricia was waiting for her transplant after having her baby, Gwyneth by emergency c-section at 24 weeks gestation. Really their blog started as a way to keep family updated as a lot of blogs do…it just turned into so much more. Also remember that this time around, Nathan (as far as I know) is not on sabbatical, they have a daughter and a foster son to think about and take care of. What they have been going through is tough, and I imagine it is not easy to share with the whole world.

So I only know what they’ve been posting online too. :)

Second of all, as Nathan has said on his blog, you can follow him on Twitter. His username is @NathanLawrenson.

The update as far as I know is that things are the same as they were. Tricia has not yet been reactivated onto the transplant list. They hoped that when doctors met yesterday she would be. They also lost a friend who had Cystic Fibrosis this week. There is a real concern that Tricia won’t make it back onto the transplant list.

Please don’t let frustration stop you from praying and thinking positively for Tricia and the Lawrenson/Kirschner families. They, and many other CF families need our support – particularly during winter months when there is often a higher risk of catching colds, flu etc which can turn into much worse things.

Pray for Tricia

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Hi Everyone,

Friends of Tricia & Nathan made this image collage to spread the word through social media for people to pray for Tricia.

I’ve been following what’s happening through Nathan’s twitter feed, and this is what the report yesterday was.

The feeding tubes seem to be doing their thing, because she is gaining weight but the lung infection is still there and it’s reducing her lung function more and more every day.

So. Do feel free to keep up with Nathan & Tricia – tweet them some encouragement (@pattysue & @NathanLawrenson). And you can find out more about their incredible story and keep up to date at Nathan’s blog.

You can also download the image and share it on your blog/twitter/facebook so we can get lots more prayers for Tricia.

**Tricia’s sister Megan is running the OBX Marathon next month to raise funds for Tricia’s trust fund to help with the medical related expenses of being in hospital and having to live in Durham while being on the transplant list again. If you’d like to sponsor Megan there are more details here.**

Prayer for Tricia

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Hi,

Tricia Lawrenson’s story is one of a miracle. It was Tricia & Nathan that ‘introduced’ me to Eva when she was working on her documentary about waiting for transplant and online friendships, 65_RedRoses. I remember how Eva stayed up praying the night Tricia got her call for transplant, 6 months after Eva had received a double lung transplant.

Like Eva did, Tricia now needs a second lung transplant. She has been ‘healthy’ for a few years now after a battle with post-transplant lymphoma. But recently her condition has deteriorated rapidly and now she is back at Duke Medical Center and needs our prayers again. Her husband, Nathan just tweeted to say that she is starting Physical Therapy so they can get her listed sooner than later.

Please pray for the treatments she is getting to work. Pray for the medical team looking after her. For her family which includes their miracle daughter, Gwyneth (almost 5) and a foster son.

Thanks everyone.

Praying for Tricia

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Many of my long-time readers are familiar with the amazing story of the Lawrensons – Tricia has Cystic Fibrosis and in 2007 found out she was pregnant the day before she was about to be put on the transplant list. She gave birth to a baby girl (Gwyneth, now 4!) in January 2008 at 24 weeks gestation, and miraculously both of them survived their ordeal. She went on to get a transplant 3 months later, and even fought a battle with PTLD (post-transplant lymphoma).

Earlier this year Tricia became ill with some infections including RSV and pneumonia, which caused some rejection. The last report I’d heard was in April that the rejection had stopped.

Yesterday Tricia was rushed back to hospital with acute rejection. It means her body is attacking at her transplanted lungs.

If you could pray for her, her family and her medical team at Duke University Medical Center that would be fabulous. I know that she and her family always value the prayers and positive thoughts of others.

65_RedRoses Premiere in the USA

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This is one for any of my readers in the US of A. Most of my regular readers have heard me talk about Eva Markvoort, a girl who was born the same week as me, but in Canada with a genetic disease – Cystic Fibrosis. While on the wait for a double lung transplant, a friend asked if she  would be willing to be the subject of a documentary about living with CF and being on the wait list for an organ transplant.

65_RedRoses came out in 2009 and has since won numerous awards at film festivals across North America. The documentary originally ended with Eva walking down  a street healthier than she’d really ever been with a future ahead of her. Of course, we know now that 2 years later she was diagnosed with chronic rejection and while on the wait for a second transplant she died a few days before her 26th birthday.

The documentary has since been updated to reflect that, and will premiere on the Oprah Winfrey Network as part of the OWN Documentary Club tonight (Thursday) in the USA at 9/8c.

If you are able to watch, please do so. Hopefully when you watch you’ll understand why I’m so passionate about raising awareness of Organ Donation and the need for people to sign up on organ donor registers and talk about their wishes with their families.

Causes I support: Cystic Fibrosis Trust

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When I first began lent I wasn’t sure what charities I would pick each Sunday – except for the last one which I plan to feature on Easter Sunday. Today’s choice was an easy one to make.

A Message from Eva from Justin Cousineau on Vimeo.

Today marks exactly one year since Eva Markvoort lost her battle with chronic rejection & cystic fibrosis. The video above was shown at a benefit concert in Vancouver in honour of Eva last month. For whatever reason, I’ve ended up following a lot of blogs written by people who have CF. They have inspired me in so many ways, not just because the resilience they have shown in how they’ve dealt with the ups and downs of chronic & life threatening illness, but also because of who they are.

Though I think it’s safe to say that Eva has inspired me more than any other person ‘online’.

I was shocked at how much it upset me when she died last March, the week before our 26th birthdays. I remember feeling so guilty that I got to turn 26, and Eva didn’t.

I’ve ended up learning a lot about CF (and lots of other things too) from following the blogs of Tricia & Nathan Lawrenson, Oli Lewington, Eva Markvoort and Tor Tremlett over the last few years.

I know that the reason Tricia, Oli, Tor and many, many others who have CF are alive today are due to the advances in treatments thanks to research done by Cystic Fibrosis charities around the world. And I know that they and their families have done a lot of fundraising for the CF foundations in their countries in all sorts of ways – Eva’s dream was that one day in her lifetime ‘CF’ would stand for ‘Cure Found’

So today, in honour of Eva, I would ask that you would consider giving a donation to the Cystic Fibrosis Trust (or the equivalent in your country for those outside the UK).

Thanks guys.

Let’s hope that Eva’s dream can come true in our lifetime!

Cystic Fibrosis Trust (UK)

Cystric Fibrosis Association (Ireland)

Cystic Fibrosis Foundation (USA)

Canadian Cystic Fibrosis Foundation (Canada)

Cystic Fibrosis in Australia (Aus)

Cystic Fibrosis Association (New Zealand)

PS It was Tricia that pointed her blog readers towards Oli & Nush (which reminds me of Charlie & Lola) for any of you that don’t really know what CF is.

Not the end of their love

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There are a few people my blog readers ‘know’ well, just because I’ve asked you guys to pray. In the last year 2 people I’ve really being pretty much bashing down the door of the heavens for are Eva Markvoort (who died a few days before her 26th birthday last March) & baby Oliver Gill (who died on Christmas morning just past).

I just wanted to let you guys know how their family & friends are continuing their legacy. They are not going to be forgotten.

Firstly, Oliver’s parents are setting up the Love Oliver trust.

This trust is going help raise funds to practically support families in Ward 2 at the Royal Hospital for Sick Children (aka Sick Kids Hospital) in Edinburgh, where Oliver spent a lot of time during his treatment. It will also be used to help fund research for children’s cancers. It was incredible to see how Oliver touched people all over the world with his smile & resilience, shown by the sheer number of comments that filled Oliver’s Blog on facebook.

Find out more about the trust here, and you can also make donations here.

And there is the #4Eva movement.

The makers of the documentary Eva starred in during her wait for transplant in 2007 have continued to work to spread the word of 65_RedRoses. One of Eva’s wishes was for the 65_RedRoses to be shown in the USA and that is finally happening!

It has been picked up by the Oprah Winfrey Network & had amazing support from Oprah, and Rosie O’Donnell. You can find out more here – Philip & Nimisha actually got to meet Oprah in person at the Sundance Film Festival last week!

I just wanted to share  - they may have left this earth, but their legacies are most definitely living on. As Eva said, ‘this is the end of my life, but it’s not the end of my love’