Nasya Nation Foundation was started in honor of our daughter Nasya Morgan who passed away Nov 14, 2014 at the age of 5. She was diagnose with terminal brain cancer known as dipg. Dipg is a rare fatal tumor that affects mainly children from the age of 4 to 12 but can hit at any age. The tumor is located in the pons and as of right now there is no known cure and very little progress has been made in curing this disease since the 50's . The only treatment is radiation and chemo and is only good in prolonging life. Most kids live 9 to 12 months once diagnosed.
Due to the location of the tumor it affects all motor skills alot of us take for granted. Things that become affected are speach, hearing, sight, all motor skills, eventually by the end these kids become trapped in thier own bodies. Being unable to communicate, hear, see, walk, swallow, sit up, move arms feet or hands, till there body can no longer breathe, thier body temp cant be controlled, heart rate becomes unstable.... Imagine being a happy healthy full of life 5yr old who is running and playing dancing singing ect and to wake up one morning unable to speak or hear or even see.... Imagine just how scary this is not only for the child but for the famlies who must sit by helpless as this takes thier baby from them. These kids needs 24/7 care and lets be honest when you're faced with just a few months left with your child who can stand to be away from them even for a moment? There is no law in place for parents to beable to take off work to spend all the time they can with thier child. I watched as my husband had to work around the clock just to pay for bills and her medical care. It broke his heart as all he wanted to do is hold his baby girl. This is so tragic and the story of many famlies. One parent stays home with child while the other struggles to keep family afloat. We spent 6 weeks traveling 4 hrs a day for treatment and many more days that were spent admitted in the hospital. We were blessed to have a wonderful community who stood behind us helping with gas cards, food cards, fundraising for money to help cover medical and loss of wages. Many foundations would send us checks to help with expenses. If it wasnt for all this support I'm afraid our family would've lost everything.
Our goal with Nasya Nation Foundation is to raise funds to help famlies battling dipg just like we was helped. We also are very determined to spread awareness anyway we can to get these kids seen and heard. Thier story deserves to be told, these famlies need to be heard. People need to be made aware of just what our kids our facing. Dipg can hit any family and kid at anytime, it did ours and all it took was one day for our world to change forever. Imagine being told you only have 9to12 months left with thier child....... I like to think of it as'' the monster under the bed" a parents worst nightmare come true over night.
Wont you please help fund our cause in helping these famlies while waiting for a cure. Any little bit can help, just a few dollars can allow a dad to hold his daughter and not have to worry about bills. What a blessing it would be to help a family smile in a time they may feel they cant ever smile. I know because of the hearts of others my family was able to keep our head above water and gave our baby girl a great year before she took her last breath.
You can follow us on fb nasya nation or keep in touch through www.nasyanationfoundation.org where you will be updated on fundraising events, have the ability to purchace dipg awareness items and much more.
Thank you for all your support
- Dale and Belinda Paugh
- Deborah Long
- Robyn Bodine
- Deborah Long
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