Do you see this picture?
Look at it closely as it represents impossible possibilities, defiance of the odds and the miracle that is Flynn.
I remember when Flynn was born – it made enough of an impression on me as a teen to step out of the “me” zone and notice. How exciting to have a baby in the family and so close by. She was a healthy, happy, mesmerizing baby.
Things were going quite well with Flynn and her two her little sisters Brodie and Jordie. These blonde cutie-pies had it all – intelligence, compassion, looks and a great cousin/babysitter. 😉
Then, when Flynn was just 15 years old, an evil challenger appeared in the guise of – Multiple Sclerosis (MS).
My impressions of those days are confusing and scary. When you hear about someone you love getting a medical diagnosis like this you freak out. At the same time, while her mum was frantically educating herself and trying to get answers from the doctors we tried to not overwhelm them with our questions. What could we do to help? Not much as it turned out.
In honour of the annual MS fundraiser to raise money for research into this extremely diverse and personalized disease, I am publishing two letters from my aunt to educate you on one family’s journey into this dark abyss. The light that was eventually turned on is from Flynn’s very own determination and optimism. She’s had an incredible ordeal in her young life and has benefited from the on-going research and continuing education efforts that are only available thanks to your generous donations.
This first letter is from my aunt sent out to enlighten people about how the money raised can actually make a difference. The second one is her explaining what “remission” means.
( The purpose of this post is to share our story. My aunt and I are not medically trained to diagnose or advise you. Every case involving MS is unique. If you would like more details please consult a medical expert. )
Over the years, I’ve sent out many messages and requests asking for sponsorship in the annual MS walk, and other MS focused events.
This note is to thank you for your support, share some insanely wonderful news with you….and of course…..ask you to sponsor me in the upcoming MS Walk.
GREAT NEWS: When Flynn met with her specialist a few weeks ago (Dr. Paul O’Connor) he told her that she is in remission. This is a very rare occurrence, and I’m sure you can imagine how thrilled we all are to share this news with Flynn. Please know – that your support over the years has helped this to come about. Flynn has been taking a relatively new drug called Tysabri – and I’m convinced that between the Tysabri and Flynn’s commitment to being very physically active – she has been able to achieve the remission. Way to go Flynn!
FOUR YEARS AGO – Flynn had an MS attack that rendered the entire left side of her body paralyzed. She couldn’t dress herself, shower herself or cut her food to feed herself – she couldn’t even smile properly for her wedding photos……….and to make life really interesting for Flynn – the MS has left her legally blind.
FAST FORWARD – to last summer. Check out the attached picture of Flynn crossing the finish line at a ‘Try a Tri’ event last summer. What an incredible achievement this was… I could never have imagined this happening. I was laughing and crying and yelling… and fumbling with the camera – so I’m pretty pleased with how well the picture actually turned out!
AGAIN – I say thank you to everyone that has supported our requests for sponsorship over the years – you helped to make this happen for Flynn and many others that aren’t as fortunate as she is.
This year, Team Beans is once again participating in the Oakville MS walk on Sunday May 3rd, and I will be very proudly walking right next to Flynn.
If you or your company could sponsor me, I would be very, very grateful.
The link to my donation page on the MS site is:
Thank you so much.
Sally & Flynn – Team Beans!
What does remission mean? Is the MS gone?
It is wonderful news, and we are over the top about it – but there are limits.
The MS is not gone. The remission just means she’s no longer on a slow steady decline – at this time. But we’ll take it. I really highlighted it in my message because it’ so important to let folks know that their donations help. I think it’s better to focus on the positive.
So she’s really just treading water, and trying to make sure she lives a decent lifestyle in order to keep it at bay. As long as she can stay on the Tysabri – it has great effects. However, if she develops an enzyme (I think that’s what it is) that rebels against the Tysabri (this is a huge simplification 🙂 she will have to stop taking it since the side affects are very serious – encephalitis causing death. She has blood tests every few months to make sure she’s still OK. This is all a crap shoot – there’s no rules about what to do or not to do.
Sadly, Flynn’s eyes are damaged beyond repair. The Optic Nerves are dying – so the only thing that would help is for the research to figure out how to re-generate optic nerves.
Flynn was 15 when she had her first attack – grade 9. She lost the eyesight in her left eye. It took a lot of parental pushing to get attention, and finally an MRI – which is how they diagnose the MS. That took several months and lots of diligence to get in to see the right doctors. Then she lost the sight in her right eye – something the Dr’s told her would never happen. But they really don’t know what will happen. Everyone with MS is different and walks a different path.
Flynn has now lived with MS for more than half of her life! I wonder if she can even remember what it’s like to see the way we see…
One of the bigger impacts that her MS made on me was with her art work. Flynn was an avid artist, and slowly the colours in her paintings became darker and darker. Then I realized that she really didn’t know what colours she was choosing. Flynn now sees in shades of grey, and she tells me it’s like someone has smeared gobs of Vaseline on her eyes.
When I write this, it makes me cry. But then I remember how wonderful Flynn is today. She is healthy and strong, and vibrantly full of life, and funny, and caring. She loves her husband and pillar of strength – Marshal, her dogs and the world she’s built to cope with her day to day challenges. Flynn doesn’t see those challenges – she just sees Flynn. And that how she wants the world to see her too!
Hugs to everyone affected by this condition. And while hugs are nice, there IS more that we can do. Participate in this fundraising event by running, walking, rolling, crawling or donating to show your support. I do it for my cousin, my friends, my children, my grandchildren, strangers… I do it to because it is the only thing I can do.
And the best news is you can too. Yes you can!
Please give – to anyone. The online link to my cousin’s team is HERE.
The link to the main fundraising page is HERE.
It doesn’t matter how you do it just DO IT. Please.