On May 7, 2006 Phoenix Francis was born with a condition called Hypoplastic Left Heart Syndrome. Phoenix was scheduled to receive a heart transplant at birth but plans quickly changed when Phoenix became very sick and it appeared that a donor heart would not become available in time to save his precious life. Phoenix was taken in for reconstructive heart surgery at four days old. A surgery planned to make the smaller right side of the heart able to function for itself as well as for the left side which was too underdeveloped to function at all. Phoenix pulled through his long 10 hr surgery and was seeming doing well for the first 4 hours afterwards until he “crashed”. His wounded heart unable to sustain all that it had been through stopped working. He was then placed on an ECMO machine which is used to beat the heart while removing the blood from the body, re-oxygenating it and then restoring it to the body, keeping him and his organs alive. Phoenix was weaned off the ECMO machined at day 7 which is longest that they wanted him to remain on it for and was doing seemingly well. He was still intibated (had a breathing machine) but had that since day 2 of his life and was weaning off most medications that where helping his heart to work properly. The problem was because his heart had become swollen during surgery his chest had remained open to give the swelling time to go down, but now Phoenix’s heart had become accustom to having that extra room inside the chest and after many attempts to close it, his heart just could not sustain it and it would set him back further and further each and every time. Phoenix had a long and bumpy road during his short 6 weeks of life but they were filled with unconditional, unfaultering and never ending love. Unfortunately on June 23rd his little body could take no more and Phoenix passed away peacefully in his mommy’s arms from multiple organ failure and complications cause from this disorder HLHS.
Phoenix Francis is my cousin, and although his battle over, mine has just begun. Although Phoenix passed away in 2006, I have just recently become involved with helping his mom, Ashleigh, raise awareness CHD’s. I attended the 1st Annual Phoenix Francis Have a Heart Foundation Walkathon in 2007, and was honoured to dress up as Fiona for the 2nd Annual Phoenix Francis Have a Heart Foundation Walkathon in 2008. It was then when I decided I wanted to help make a difference. In the fall of 2008, I decided I was going to talk to my principal about ways that I could get my school involved. I then put together an assembly which happened May 5th , 2009. My cousin Ashleigh had come down to speak about her son. This was just the beginning of what I was about to accomplish. For the 3rd Annual Phoenix Francis Have a Heart Foundation Walkathon I put together “Phoenix’s Shakedown Crew: Collingwood” which consisted of me and one of my best friends, Samantha. We went all out. We had learned “The Hoedown Throwdown” from The Hannah Montana Movie, plus had outfits which had custom made shirts. Another thing I had done was putting together a CHD awareness video that was given out at the walk, posted on youtube, facebook, and two separate websites.
In early November of 2008, I had been helping Ashleigh send emails to see if there was anyone who would be willing to help out with the cause and I emailed Canadian Country music singer, Jessie Farrell. She couldn’t attend, but when I sent her my cousin’s website (www.phoenixfrancis.com) she wanted to donate a signed CD to be auctioned off. A few weeks later, I had a signed copy of her debut album “Nothing Fancy” in my hands for the cause. Jessie and I continued emailing and I told her that we raised $17,000 at the walkathon and if she was playing any shows in Ontario, my luck, she was playing in Owen Sound on September 11, 2009. I finally got to meet Jessie, not only is she my idol, she is my friend. I got to thank her, by giving her a “Phoenix Bracelet”. Which she then wore the CCMA’s (the big country music awards of Canada), and I have noticed that she wears it quite a bit. I then found out that she was opening up for Doc Walker in Owen Sound on October 21st, 2009. My best friend, my mom and I walked in and immediately went over to the merchandise table because I wanted a shirt and had to get Ashleigh and Jessie’s manager then asked “are you the girl who works with the open heart thing?” and I was thrown off guard and replied with “Congenital Heart Defects?” and he was like “Yes” and we then continued to talk about what CHD’s were, how I became involved, etc, I will admit, I was very nervous. This was the first time that I had ever been questioned about the cause I raise awareness for.
Then after Jessie’s set I went to see her and when it was my turn I just stood there and Jessie said “Hi…YOU MADE IT!!” I think the entire lobby turned and looked. She was wearing the bracelet that night, but had just taken it off, I was bummed that she didn’t have it on, but still. Once again she knew who I was. While I was talking to her I asked her if it was possible to use her song “Coming Home (Jono’s Song)” for another CHD awareness video (www.tinyurl.com/chdvideo) and I had gotten both her and her mangers permission to use this song!
I believe it was the week before the October 21st show she filmed CMT Canada’s show “Dedicated” where she was the special guest host and it aired on CMT November 14th, 2009 Typically, every special guest gets to give a dedication. I had just gotten home from work and I was eating my dinner when my dad put CMT on, I thought the program was only 30 minutes long but I was wrong. It was commercial so I sat there off in my world of texting when the show came back on Elissa Lansdell announced it was now going to be Jessie’s dedication so I half listened. She then started talking about a “fan slash friend” she has who gave her a bracelet with a angel on it (yes, this would be the bracelet that I gave to her Sept. 11th) and she began talking about Phoenix and how he had lost his battle with HLHS. I knew she was talking about me but when she said “This girl is Bobbie-Jo Stewart” I screamed, cried… and choked on potatoes. She dedicated “Risk” by Paul Brandt to me, which most likely didn’t help the water works any because that song is a very personal song for me, (check out www.iwouldratherrisk.blogspot.com). This was all too real to be true. But being honoured for my work was an amazing feeling. This was a major reward for what I’ve been working so hard on.
In August, I created the facebook page “Join The Fight: CHD” to go along with the website I was in the middle of creating (www.JoinTheFightCHD.webs.com), we have just recently hit 1,257 fans on our facebook page, more then I have ever thought possible. And we currently feature about 10 CHD stories on our website. Through this, I have had the honour of getting to know many, many heart families via twitter and facebook. All of which I’m happy to call friends. They are the ones who have trusted an 18 year old, from a little town in Ontario, Canada with the photo’s of their child, their stories all in the name of CHD Awareness.
Along with having the support of Jessie, I’ve had numerous other country singers who have been supporting JTF! Aaron Pritchett (I also met him Sept 11th, but if we want to get technical, I met him early in the morning September 12th) is following both my “personal” twitter, and the twitter for the website, and he also signed our guestbook! Jesse Tucker (Jessie Farrell’s guitarist) has joined our facebook group (as well as Jessie), and checked out the site, Kortney Wilson has joined our facebook group and voted for us for a Shorty Award in Non-profit, Johnny Reid has also been to the site and there are a few others. It just goes to show that not all “famous people” are stuck up, and are all about them. Especially the country singers I have listed here. They are the most down to Earth people I have met. “CHD awareness one country singer at a time” – Tori M.
Did I ever think I would accomplish what I have? No.
Did I take a risk? Yes
Are there ways others can help? Yes!
If you are trying to find ways to help raise CHD awareness you can do many different things. You can attend events in your community, or if there aren’t any going on, create one! The first year will be a little slow, but if you make it an annual thing then you will begin to pick up momentum and it will grow every year. Create an awareness video; they’re one of the best ways to start getting involved. Write up something on Congenital Heart Defects and post it on your facebook, take part on online things that are happening such as CHD awareness week. Most importantly you can learn about someone’s battle with this cureless defect.
CHD’s have no cure, only solutions. A heart surgery or heart transplant are not a cure, they’re just mending or “replacing” the heart. No matter what age you are, where you live, what you do. There are many ways to help raise awareness for Congenital Heart Defects.
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A story that teaches us, everyone can get involved! Thanks!
MamaOtwins+1´s last blog ..When your heart is broken: Seven Hearts Series
My best friend’s son was born with this same condition. He is now 2 and is scheduled to have his 3rd reconstructive surgery in june. I have personally witnessed the gravity of this condition and I applaud your efforts to raise awareness!
traci fritz´s last blog ..Wordless Wednesday: One year ago
Bobbie Jo is an amazing young lady. I’m so glad you highlighted her on your blog.