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Pyriel's ALS/Lou Gehrig's disease

(synopsis : I've been told that my story is too long so here is a short version)

I am 31 and have ALS which is a terminal and deteriorating disease where are your muscles waste away until you are literally skin and bones. It also comes with breathing issues,  loss of mobility and for me especially comes with a debilitating cramping and pain. Apparently having this disease at 31 is already rare but having it affect you so rapidly and so painfully is even more rare. Lucky me right?

The medical expenses are astronomical for someone to die and while I've accepted my fate I would like to set things up for my husband and daughter to be set When I'm Gone. So far as the the donations we have received have gone to our wedding , we are in process of my husband adopting our daughter comma and medical items to make life a little bit easier in the house for us. Things like magnesium lotion is to minimize cramping a special heating blanket to keep my body from being too stiff and more comfortable clothing. To compensate before the lovely donations I have in-turn donated my entire collection of clothing that I can no longer wear and items that I will no longer use like my personal computer game systems and more.

Our current hurdle is the we live downstairs in our apartment and I am mostly stuck in the apartment because I can't get up the stairs. The worst part is I can't do things like take our daughter to the park or even go outside for fresh air. Our hope is that any future donations would go to moving to a place is more conducive to a wheelchair which will allow me access to the world. We are trying to get access to homes for Humanity and I could definitely use some help looking for resources to help.

Thank you for reading and if you can't donate please share.

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(full version)

My name is Pyriel Infinity, I am 31 years old and I have ALS. It is rapidly eating my muscles away and have been told I dont have much time but before I go there are some things I hope to do. Some things you can help with like helping get a house and some you cannot like my hope to see my daughter at least go through kindergarten in 2017.
       A little about me? Of course. I used to work with children in one way or another for 15 years but many of my favorite jobs were with preschool children with special needs and traumatized youth in foster care. This year Ive had to stop doing my dream career because the ALS/Lou Gehrig's diesease has caused a broken ankle and eaten my hands away so badly just to type this has taken 20 minutes. I've also had to stop doing all of my hobbies to help me de-stress. Without use of my hands I can't play video games, draw my art, crochet or even brush my daughter's hair

I have a beautiful, smart and fiesty 5 year old who is  being brave through all this. My fiance (now husband) and partner of almost 12 years is crushed but also a huge support. They are my world and the reason I have overcomed all other adversities. 
        This new hurdle is my last but I going out fighting to the bitter end. One thing we need is a house because the stairs are a hassle in my apartment and there is no wheelchair access avaible. That is not the only reason I hope to move into a house before the ALS takes me. My dream has always been to have a home that is ours to have memories in. As a child I moved a lot in foster care and was often homeless but I hope to offer my daughter the stability of always having a place to call home no matter where she is. I was also hoping to get married in our home so that could be our first memory there but I do not wish to risk passing before I get to married the love of my life so we are hoping for a simple quick marriage at the court house as soon as possible after my daughters birthday. (update : we got married October 1st) Last reason a home is so important to me is because when I do pass I have requested to have my ashes be used to grow a giant Weeping Willow tree (or a red cherry blossom)  in the yard for my daughter to always have me close. She says she will take care of me as a tree and read me stories and tell me all about  her day in school. I hope this can be a small comfort in helping my daughter and husband cope with my loss.
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If we can get to $5,000 that will all be used for a down payment on a home(update :without my income we no longer qualify for a first time home buyers loan,  so no house :( ) . Anything passed that will be used for medical bills and equipment (motorized wheelchair and oxygen), ramps and anything to help me in dealing with ALS.

I am also hoping to use some small amount of money to help my husband adopt our daughter so I know that my sweet baby will stay with her loving father.

Getting these few dreams complete before I go would mean the world to me because I know my family and friends could instead focus on being a support for me in this hard time.
        
Thank you for taking the time to read because as I now have learned, every second is precious. 

Please help me by sharing my story.

If you can't donate please share a positive story about us or anything positive because this is a hard topic for us all

Thank you
<3
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Medical Proof





This photo my daughter drew is her saying I'm strong. 

Organizer

Pyriel Atlas Infinity
Organizer
Mountlake Terrace, WA

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