Tarastir
Destrier
Posts: 68
Karma: 44
Pilot name: Tarastir
Platform: Android
League: Expert
Server Region: Europe
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Post by Tarastir on Oct 16, 2019 5:02:11 GMT -5
Hello,
Some of you remember me from previous years (since I'm not playing anymore). I've joined the game shortly after the Britbots. I remember the good old matchmaking and playing with 4 Boas. I've played as long as I could without spending real money.
This game has helped me to stay sane when life has become a struggle for me and my family.
In June 2016 my daughter was born. It didn't go exactly as planned, as a c-section was required. And she was diagnosed wit a low muscle tone. But nothing more. We started her physical training after few months (when she gained some more, as she was rather small). She was developing slower then other children, but it was all due to the low muscle tone they said.
It took almost a year until we knew what was really causing her problems.
Our daughter, Maya (Maja in polish) has trisomy 12p - a rare genetic disorder. She has an additional short arm of chromosome 12. It's similar to Down Syndrome (trisomy 21), but it's so rare that they didn't give it a name.
It's hard to tell what she will achieve in her life, as there are not some many patients with it, and every child is different. There are less than 10 such children in Poland. But I'm a part of a facebook support group that gathers more that 100 parents, mostly from the USA. Some of those children are walking on their own, some can talk, but no patient is self-reliant. And epilepsy is common.
Now she's 3 years old. She can't walk on her own, but we are close to it. She can't say a word (even "mama" or "papa"), but she understands almost everything. And she's a real sweetheart!
I've just started a fundraising using a popular polish platform - zrzutka.pl - Maybe some fellow polish players can confirm it's legal if you have doubts. We will use the money to pay for the therapies (some are refunded), for her new AFO's (special "boots" that help her learn to walk - partly refunded), but we will pay for other things as well.
BUT - be aware that this is not a life-saving fundraising! Maya life is (currently) not in danger.
Here's the link. Right now it says that fundraising is not yet authenticated - it will be shortly.
Thank you for your help. If you can't afford or don't want to spend any money - I appreciate every comment and thumbs-up. If you have any questions fell free to ask. I'm not sure if we will post any photos of Maya online. Unfortunately my wife doesn't want people to know the truth... But it's a long story.
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Post by maverick on Oct 16, 2019 7:31:00 GMT -5
Hi, first of all it's brave of you to open up about your personal life to a bunch of strangers, it's hard enough raising children without disabilities especially something so rare that there would probably be little research into it. I wish you, your wife and little Maya all the best. Do you have a PayPal account? I would prefer not to enter my credit card details into the above website, if donated as a gift PayPal will not charge a fee. Kind regards Garry
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Tarastir
Destrier
Posts: 68
Karma: 44
Pilot name: Tarastir
Platform: Android
League: Expert
Server Region: Europe
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Post by Tarastir on Oct 16, 2019 8:01:45 GMT -5
Hi, first of all it's brave of you to open up about your personal life to a bunch of strangers, it's hard enough raising children without disabilities especially something so rare that there would probably be little research into it. I wish you, your wife and little Maya all the best. Do you have a PayPal account? I would prefer not to enter my credit card details into the above website, if donated as a gift PayPal will not charge a fee. Kind regards Garry
Thanks for you reply! I was anxious because i wasn't sure how the people here will react to my post. To be honest I don't consider the forum members as strangers - we have a common hobby, some people are my age (30+) and we are friendly towards each other. That's why I was able to share this with you - I feel safe here. It's easier that speaking to some people face-to-face.
As you said - it's harder than rising non-special child. That's how I call it - living the "hard mode". But still - there are other who have bigger problems.
I do have a PayPal account, and paypal.me enabled (with my username, /Tarastir).
Edit:
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Post by maverick on Oct 17, 2019 6:51:21 GMT -5
Hope it helps
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Tarastir
Destrier
Posts: 68
Karma: 44
Pilot name: Tarastir
Platform: Android
League: Expert
Server Region: Europe
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Post by Tarastir on Oct 18, 2019 0:14:09 GMT -5
Thanks! We really appreciate it!
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Tarastir
Destrier
Posts: 68
Karma: 44
Pilot name: Tarastir
Platform: Android
League: Expert
Server Region: Europe
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Post by Tarastir on Feb 25, 2020 5:43:59 GMT -5
Hi! I thought I would give a little update after 4 months. My daughter finally started to walk on her own! She did this just after Christmas for the first time, and she's a lot more independent now. She still doesn't speak, but she's more and more social since she started going to the integration kindergarten. We don't announce our fundraising any more (and maverick is the only person who gave us any money - kudos to you!). They are active, but we are good without them.
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Post by duckdecoy on Feb 25, 2020 10:57:25 GMT -5
Hi! I thought I would give a little update after 4 months. Hi check your zrzutka. All the best for you and your family.
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Deleted
Deleted Member
Posts: 0
Karma:
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Post by Deleted on Feb 25, 2020 11:21:09 GMT -5
Hi! I thought I would give a little update after 4 months. My daughter finally started to walk on her own! She did this just after Christmas for the first time, and she's a lot more independent now. She still doesn't speak, but she's more and more social since she started going to the integration kindergarten. We don't announce our fundraising any more (and maverick is the only person who gave us any money - kudos to you!). They are active, but we are good without them. Amazing news! Wish I would have read this sooner. Check Pay Pal ... Give your daughter a high 5 from the most talented War Robots player around. Cheers. Ghost
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Post by Eradicator1 on Feb 25, 2020 13:30:04 GMT -5
Hi! I thought I would give a little update after 4 months. My daughter finally started to walk on her own! She did this just after Christmas for the first time, and she's a lot more independent now. She still doesn't speak, but she's more and more social since she started going to the integration kindergarten. We don't announce our fundraising any more (and maverick is the only person who gave us any money - kudos to you!). They are active, but we are good without them. Check your PayPal. Just sent some. Keep us updated every now and again. Was glad to hear about the progress. My heart goes out to your family and Galahad gives you all a few good luck zaps too!
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Post by T-Town Striker on Feb 25, 2020 14:01:20 GMT -5
Contribution sent along with a smile , stay strong as a family
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Tarastir
Destrier
Posts: 68
Karma: 44
Pilot name: Tarastir
Platform: Android
League: Expert
Server Region: Europe
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Post by Tarastir on Feb 26, 2020 5:56:16 GMT -5
Thank you, everyone! You words mean a lot to me! I will keep you updated on her progress. I also didn't expect you will be so generous. I'm really indebted! Here is a photo of those AFOs (ankle–foot orthosis) and boots I mentioned earlier. Right now I can say that the boots are funded entirely by you!
And here is a video of my daughter walking on her own (without someone holding her hand). It's been recorder a few days after she did it for the first time. drive.google.com/file/d/1d1K05Od0hu3yB4BbQS1pkRf7go7kfsUj/view?usp=sharing
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Post by T-Town Striker on Feb 26, 2020 7:28:14 GMT -5
Oh my what a very special video , started my day off quite well seeing it.
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Deleted
Deleted Member
Posts: 0
Karma:
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Post by Deleted on Feb 26, 2020 7:32:05 GMT -5
Thank you, everyone! You words mean a lot to me! I will keep you updated on her progress. I also didn't expect you will be so generous. I'm really indebted! Here is a photo of those AFOs (ankle–foot orthosis) and boots I mentioned earlier. Right now I can say that the boots are funded entirely by you!
And here is a video of my daughter walking on her own (without someone holding her hand). It's been recorder a few days after she did it for the first time. drive.google.com/file/d/1d1K05Od0hu3yB4BbQS1pkRf7go7kfsUj/view?usp=sharingNo worries! Awesome video of your princess. She is walking really well, glad it helped!
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Post by Loganspawn on Feb 26, 2020 10:46:14 GMT -5
Keeping your family in my prayers first time seeing this post. So glad to see she is walking keep on being a great dad and if you ever need to talk we are here. Raised 7 kids myself and now have 7 grandchildren its tough but oh so worth it!
You guys that were able to help out so far.... YOU ROCK! pat yourselves on the back.
Hopefully more will see this post as its a bit tucked away from what most people look at.
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Post by 乃ㄥ卂乙 on Feb 26, 2020 13:04:32 GMT -5
Best wishes guys, sent you what I could afford, hope it helps
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