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£1,000raised of £1,000 target by 24 supporters

Weʼre raising £1,000 to Support Simon with his treatment and any needs he might have

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Story

The reason I created this fundraising page is because lot of family members and friends have asked me how they can help me and it is easier to update all in one go with latest activities we are doing! And if you wish to help us financially we will be very grateful! As I have already told everyone at the moment we don't need any additional money as Simon is still feeling fine, but we don't know what future brings..

I have written a summary of current status and will try to keep everyone updated as often as possible.:)

Simon was diagnosed with Duchenne Muscular Dystrophy in December 2017 when he was at the age of 7. We discovered this diagnosis accidentally when doctors done full blood test instead of simple one when we got into hospital regarding his toothache. After going through a lot of additional blood tests, gene testing showed that Simon has missing dystrophin (42 & 43) which relates to DMD. It was a great shock for me as a mom to get the news like this... BUT... We won't give up, we believe that cure for it will be found! Our task is just to stay strong as long as possible and enjoy a life while we can!:)

So.. Our plan at the moment is to do as many activities as we can while Simon is still able to walk (we never know how soon it can happen, on average boys by age of 12 are in the wheelchair). I have created 'Simon's To Do list' showing activities we have already signed up for and what we have in mind to do in the future! If you have any other interesting activity in mind, please share it with us :) Haha I haven't added Bunjee Jump just because there is an age restriction of 14 I think, but you know, we can probably do that even if we have to use a wheelchair! :D So that will be on the other 'To Do' list :) We are already signed up for Indoor Skydiving on 16th February and Obstacle Run in Windsor on 24th March.

From medical perspective there is not much what we can do at the moment as there is no cure. At this stage Simon needs to have a physio therapy which we are dealing with at the moment to get it done. Simon needs to have active lifestyle, but not too much as well as it can destroy his muscles even quicker and damage his kidneys. And we don't want that! We are going for swimming once a week and Simon absolutely loves it!:) I have applied for Funded Swimming classes for Simon, but site in Reading is closed at the moment due to some issues with building but as soon as it is back up and running, we will start to do classes there. And they are fully funded for children with disabilities (I know sounds weird to say that Simon has a disability as he is physically fine.. well almost.. at the moment..) Simon is also attending Scouts where he is having fun with other 'Beavers'.. And we do Explore Learning (we call it 'Fun Learning') to help him with his maths and english and he is doing great :)

Doctor's advised that we do not need to change any eating habits and don't need to take any vitamins except Vitamin D. However as doctor said that few parents try to use natural ingredients etc., but it has not proven that it improves this condition, but it is up to us if we decide to use them or not. And yes we do! My mom has been reading so much regarding natural ingredients and it has been proven in our family that they actually help! So my mom brought us 'Salveo' natural ingredients powder (invented by Latvian Healer Ilze Jason who advised that there is no disease you can't treat) and we are eating it daily. We even came up with a special name for it - Popeye Food :D (well, Popeye had spinach, we have this :D) Awaiting order from oder natural ingredients company which have showed amazing results, when we start to use them I can share more regarding that.

We have a follow up appointment in April and then we will discuss with the doctor if we should start to use stereoids to slow down condition. We done checks for a heart, haven't had results back yet.. Chased doctors.. If heart is already affected, we will have to start to use medication for that! It is scary as the main reason for death is exactly heart failure.. But let's stay positive- everything will be fine :)

We have been added on the database for trials as well, so if anything suitable becomes available, nurse will call us to enrol for the trial!

So that is update so far, I will keep posting updates as we go!:)

I just want to say thank you to everyone who have supported as emotionally and financially! I am really surprised how generous people can be, even strangers!:)

Thank you!

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Updates

51

  • Monta Burkevica7 days ago
    Monta Burkevica

    Monta Burkevica

    7 days ago

    Super busy day for us today - 5 appointments in one day!!😲🏃 Started with Occupational Therapist appointment in Slough at 9am and then had to get to Great Ormond Street at 11:00! Of course it was not possible, so we were a bit late, but still got to do everything what was planned!🤗 Lung function, electrocardiogram and 2x X-rays done. Now all the results will go to our doctor who will prescribe steroids for Simon to start using on 10 days on 10 days off course.

    Update from the Page owner

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  • Monta Burkevica20 days ago
    Monta Burkevica

    Monta Burkevica

    20 days ago

    Follow up appointment at Great Ormond Street Hospital today went very well. Physio - all checked and his abilities are staying stable (getting up from the floor was even a bit better than last time). Seen doctor afterwards and we are now getting everything checked before Simon will start using steroids. Urine test and blood test done today, further tests to be done some time in January (spine check, xray and echocardiogram). Once this is done, he will be 10 days on, 10 days off steroids course. #duchennemusculardystrophy #staystrong

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  • Monta Burkevica3 months ago
    Monta Burkevica

    Monta Burkevica

    3 months ago

    Another physio session done! Simon had been great so far, his balance is very good, just need to work more on coordination. At this stage we don't need further appointments locally, however physiotherapist is attending Simon's school on 8th Nov to work with teachers and advise how they can help Simon to keep active, but not over-exersise. #staystrong #fuckduchenne #SupportSimon

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1 year ago

Monta Burkevica started crowdfunding

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Page last updated on: 1/10/2019 4:18 PM

Supporters

24

  • Barry Osborne

    Barry Osborne

    Jul 20, 2018

    Hi Nicholas obuhovs told me about your story about your special little boy best of luck with everything.

    £155.00

  • Nicholas obuhovs

    Nicholas obuhovs

    Jul 18, 2018

    £50.00

  • Anonymous

    Anonymous

    Jul 5, 2018

    £50.00

  • Nicholas obuhovs

    Nicholas obuhovs

    Jun 26, 2018

    My blessings and prayers for you 🙏

    £30.00

  • Nicholas obuhovs

    Nicholas obuhovs

    Jun 17, 2018

    £100.00

  • Saleha Rahmani

    Saleha Rahmani

    Jun 13, 2018

    £50.00

  • Linda Sildere

    Linda Sildere

    Mar 20, 2018

    Spēku un izturību!

    £25.00

Monta Burkevica

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About the fundraiser
Monta Burkevica

Monta Burkevica

Slough, UK

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