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Lee's Race Against The Clock

  • ***UPDATE*** - Exciting news!      11 September 2020
    Posted by: Claudine Douglas

    From Lee:

    “Hi everyone! Well, there’s been a major turnaround of events regarding me trying to get to Russia for treatment. The borders simply aren’t opening up and I feel like I’m running out of time. My mobility is deteriorating rapidly now and I feel like time is up and drawing to a close with being able to beat this thing. The borders to Russia remain closed and show no sign of opening any time soon. Unfortunately, Russia is now become a no-go for me. The only other option was for me to go to Puebla, Mexico for the exact same treatment, at the exact same expense at Clínica Ruiz (the highest volume HSCT centre in the world). However, the borders there have been closed as well. I always felt Russia would have opened first.

    BUT….by some small miracle, the borders have now opened in Mexico AND a space has become available at Clínica Ruiz! I simply cannot wait. I have to go. I’ve taken the drastic measure of mortgaging the house and taking out a personal loan to cover the cost of treatment. I have to leave in….2 WEEKS!! Claudine is coming with me as we will be living in an apartment adjacent to the clinic for a month and I’ll need a full-time caregiver when not inside the clinic. We are off! It’s all so sudden and there’s so much to organize, but I’ve always maintained I can’t and won’t stop without giving this my best shot.

    Guys, when this page was originally set up, I thought I had the time to raise the funds before I left. This MS has proven me wrong. It’s showing me that once it takes grip, it waits for no-one. So the focus of the page has now suddenly needed to change. The new focus is on raising the funds to pay for the mortgage and personal-loan debt this treatment is now forcing me to take on and that I’m going to have to face when I get home from Mexico. It’s huge and it’s stressful but I know in my heart it will be worth it. I want you all to know that I appreciate each and every single dollar you’ve all been so generous in giving me to help me on my way. I appreciate it beyond words. Can you please all do me a favour and share this page with as many people as you can. Every single dollar makes a difference. Thank you all so much.

    I have set up a Facebook page so you can all follow my journey to Mexico. You can find it at this link Claudine or I will be updating it daily. Love Lee xx

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  • 1st update...and a huge thank-you to eveyone!      23 July 2020
    Posted by: Claudine Douglas

    Hi everyone, Lee here. I've given this little write up to Claudine to post. Well, this is obviously the first update I’ve done since we started this page so bear with me because I’m totally new to this  Firstly, and most importantly, I want to say that I’m blown away by everyone’s generosity. Each and every single one of you. I hate asking for help at the best of times so I’ve really put myself out there getting this page up and running with Claudine. I’ve got a huge mission in front of me raising these funds and each and every single dollar that you’ve all contributed is, without a doubt, appreciated beyond words. Thank-you all so much.

    I thought it was time to let you all know where it is I’m actually at. As Claudine mentioned in my story, I was initially disagnosed with MS in September 2015. Since then, it’s just been a slow and steady decline. Back then I was on my long-awaited holiday in Amercia. I was walking and biking everywhere everyday. Now, after 4 ½ years of slow and creeping decline, I’m really unsteady on my feet, my mobility is getting worse and driving a car isn’t something I’m always going to be able to do. The mental and physical fatigue is frightening at times. I know in my heart that going to Russia is the absolute best chance I can give myself of halting this disease in its tracks. I’m determined to get there and feel really uplifted by everyone’s support.

    Starting back in March, just before lock-down I had a relapse. Up until that point, the decline had been relatively slow, but sure. However, the relapse (which is like a sudden attack) lead to numbness down my entire right side, it slowed my walking down further and I started experiencing tremors on my upper limbs. It was extremely scary and depressing. My next MRI after that confirmed there was now more damage to my hemicord (found in the spine/neck).

    It took having that relapse, after 4 ½ years, to medically qualify for starting the process to obtain medication in the form of DMD’s (Disease Modifying Drugs). One of the myriad of things required to qualifying was being able to walk 500m without assistance or stopping. I did it! Now I’m just waiting for the final sign off from Pharmac. I’ve got high hopes for this medication but, as confirmed by my neurologist, these drugs will, at best, put me in a ‘holding pattern’. The end result will be the same. The only difference is that getting to the end result will be slower. That’s all. I can’t accept this as the final solution to this damn disease so am as determined as ever to get to Russia as soon as possible. I hope to have my first intravenous dose of medication by the end of this month. Fingers crossed! On a positive note, while the borders to Russia are still closed, the Russian government is working hard on opening them up for medical treatments. The hospital I’m headed to in Moscow is aiming to reopen in September. More fingers crossed! It’s a long road to Russia, but I’m determined! Again, thank you to eveyone for the support. Love Lee xx

    P.S The attached video is of me being assessed for the 500m walk :-)

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