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Support Tyler's Fight Against Moyamoya

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My name is Ashley and I am a friend of Amy’s. I am creating this GoFundMe in hopes to help alleviate some stress on finances during this difficult time. Please see her updates as they come in below:

2/13/25
So I just want to give a little update on Tyler. The past 48 hours have been nothing but a complete whirlwind. I wanted to give you all an update because I know that you guys care deeply about Tyler, and I still feel like I am trying to process the information myself. I feel like I’m in a bad dream and that I will wake up; however, the outcome is not going to change. Now that family and close friends have been made aware, I wanted to share with you guys. I am so incredibly grateful for your concern, prayers, thoughts, and endless offers of help in any way. Truly, it means that we can count on you. It takes an awful lot for me to ever ask for help or anything for that matter. I’m the one who always gives, gives, gives, and sometimes you just have to embrace others when they offer help and kindness, thoughts, and prayers. So I’m going to just give a brief little detail on what happened initially. Tyler had become ill and had been diagnosed with RSV, something that we have never encountered before. So we were initially admitted to the children’s hospital with him needing some extra support with oxygen. Tyler then started to feel a little better, but he ended up having some issues that started on Sunday. We all landed ourselves back in the ER, and it was due to Tyler having some drooping on the left side of his face. We were told that Tyler seemed to have Bell’s palsy, so we went home. Tyler seemed to be doing okay on Monday, and Tuesday is when this unimaginable story began. We ended back in the ER Tuesday morning. Tyler was showing signs of being lethargic, and his face was still droopy on the left, but then it became more than that. It became his lower extremities as well, so his whole left side; he lost the ability on the entire left side. He was sort of dragging his left foot, and his arm was just dangling. I knew something was very wrong, so I brought him to the ER immediately. As soon as we checked in, the triage nurse came over, and that’s when everything started to happen. We were being rushed into a critical care room. They notified the stroke unit. Next thing I know, he had between 10 and 15 doctors swarming him. Everything happened so fast. I don’t even think it was 15 minutes, and he was already in for an x-ray. After the x-ray, they wanted better pictures, so then they did a contrast CT scan. After the CT scan, they decided that they wanted to do an MRI. He was placed under general anesthesia, and they proceeded with that, and that came back with news that no parent ever wants to hear: that my baby had a stroke! I just been feeling like I’ve just been punched in the gut, that i’ve been living in this nightmare and can’t wake up. The unknown is one of the scariest things, and the news is that with those scans showing both sides of his brain, he has many signs that he could possibly have another stroke at any given time. So we will be heading in for a procedure called the DSA, and that’s going to give them an even better picture of what is going on. I know this is a lot to comprehend. I’m still trying to comprehend it myself. My poor baby, he’s so sweet and gentle and kind and loving, and he just never gets to have a break. The hardest part is that he goes through all these things, and he’s still so resilient afterwards, and he still lets his light shine bright, and I know that he will continue to do so. It’s taking me a lot to even try to speak of this, but I did because I wanted to share this with you guys. You guys have always, from day one, shown your love and support for him. You have no idea how encouraging your words are, as well as your prayers and your thoughts, because I know the power of prayer can literally bring miracles. So please, please, just continue those prayers for Tyler.

2/14/25
Updated: We found out some devastating news from his surgery. I need time to process before i can speak about it.

The procedure went well, the results however…

2/14/25
Just an update: I’m extremely overwhelmed and I truly don’t even know how to say what I’m about to say, but here it goes. These past four days have been undoubtedly the worst days of my life my sweet boy has endured multiple strokes. He has been so brave and so strong through all of it. I have no idea how a 14-year-old can be even stronger than an adult because he is so much stronger than me. Today we had his procedure, his angiogram and we received the results of that and it has been nothing but overwhelming news. Hardest part is when you get this news in front of him I couldn’t cry because I didn’t want him to see that something was wrong. Tyler was diagnosed with the very rare Disease called Moyamoya. I know one of the hardest things about this disease is that they don’t know much about it, but as we were reviewing his MRIs and the angiogram test and just seeing how his little brain is working and not working at the same time has become so hard that he’s had multiple strokes and in any given time he could have more. So here comes the hard part. The hard part is that my sweet little baby is goning to have brain surgery not once but twice he will have to have brain surgery for each side of his brain. They will have to reroute arteries and mend them together. My heart is so completely crushed into a million pieces. I always say that God only gives you what he knows you can handle, but I feel like I’m being tested. I don’t know how strong I can be. I just want someone to wake me up from this nightmare. It’s looking like they’re trying to schedule his first surgery on Friday next week and then a couple weeks later we’ll have to do the second surgery. I have no idea how long I’m gonna be out of work for recovery and procedures. All I ask is please pray please pray God will wrap his arms around us all. We need them more than ever.
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    Organizer and beneficiary

    Ashley Weaver
    Organizer
    Brockport, NY
    Amy Emens
    Beneficiary

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