I really dont even know how to start this post because so much has happen and been said. I will start here. I am a resident of Michigan City I live on 316 N Calumet Ave. I work for Michiana Resources and my husband Lawrence Winston works for Safe Harbor morning and after noon care. Jazarria Winston is my child and she is 3 years old she has a actual disease called Spinal Muscular Atrophy type 1 (SMA). Her disease is rare so rare that she cant even go to Rileys Hospital for help. We travel every 3 to 6 months to Cincinnati Childrens Medical Center in Ohio. Unfortunately we have not been able to take her there at all of this year because of her fragile condition she is in and not having space enough to ride her and life saving equipment in. She has a medical stroller that lays flat called a Easy S that she is suppose to ride in and it is to big and to long for our van. We started out with the intentions of just raising 75,000 for her a Promaster Commercial Van (chassis) 3500 Extended High top. We needed something that would be able to fit our entire family of 5 which includes 3 children under 5. All having to sit in either a car seat or booster seat or in Jazarrias case her medical stroller. The van cost is around $40,000 roughly. It does not have windows in back, heat, seats, she would need a fridge for her food, at least 8 outlet plugs and a latch system to secure Jazarria in her seat. So the cost for that was around $15,000 Then we would have to have a undertow lift put in which is another 15,000-20,000 to buy it and install it. I have done my research for what is suitable for my child. If anyone thinks that they can find something that is cheaper and still fits all of our needs I am more then open to suggestions and would count it a service to have your help. As for the other $25000 it would go to getting Jazarria to Cancun, Mexico which is the ONLY place for treatment due the rareness of this disease. All other possible future treatments in the United States are in clinical trials and she does not qualify for any of them. I have also done the research on this as well. This is NOT A VACATION or a scheme of some sort. These treatments cost $8,000 dollars every 6 weeks and the donations from this fundraiser would help in aiding her towards a better quality of life. Some statistics about SMA 85% of children dont live to see 1 and the children that pass this age 95% of them wont live to see 2. So I ask YOU the question Jazarria is 3 where does that leave her? I set this fundraiser up legitimately with a EIN number which is a tax id number under the name JW Charitable Fund which means any funds donated MUST ALL BE ACCOUNTED FOR. Reciepts of anything we buy have to be kept and every cent has to be shown where it went.Your money will be used for Jazarria and unfortunately it does cost a lot of money. My husband and I spend every bit of $1500 a month on her nutrition that is not cover under medicaid. There have been a lot of hurtful things said and I know that half of that has come from not understanding our situation but if anyone will take the time to read this I hope this brings you into a better understanding of our situation. I hope that there are people who are willing to donate to her cause to a better life to a longer life. I hope that some of you want to go beyond that and get to know us, get to know Jazarria. I said this before I will say it again we need the help of our community and I hope there will be people to help us. If you would like to donate you can at any Chase bank deposit funds under the name of JW charitable fund. You can also go to https://youcaring/manage-fundraiser.aspx?frid=275254#gallery If you have any questions please contact me on fb or you can call me personally 219-214-6533 I am open to answering any questions any one may have but please ask dont assume. Dont go off of someone else you know because every disability is different and the options that they may have are different as well as there needs. I pray to get help for her and to make some long lasting friends as well that will keep Jazarria in there prayers and thoughts! :) I am going to tag a few people I know and ask that you state how you know us too please!
Posted on: Sat, 13 Dec 2014 19:10:21 +0000