Race for Jase’s NPC Cure
Hi, my name is Hannah Umphers, mother of Jase, we are in a race to save our son's life and we are asking for your help.
Jase is 5 years old. He loves to be outside, riding on the ranger with us, watching his favorite cartoons, dinosaurs and playing with his big brother. Jase is always a happy, smiling little boy unless he has gotten sick with something. He was born July 1, 2016 and on August 31, 2016 we received devastating, life-changing news. Our little boy would not get to grow up- he has Niemann Pick Disease Type C (NPC).
When we got the most heartbreaking news that Jase had NPC, we were devastated and didn't know what to do. We then turned to the Lord and told him would would do whatever we needed and care for Jase how he wanted us to. We trust and give it all to the Lord.
Jase was able to sit up, crawl and pull up but he is now no longer able to do that. He cannot walk or stand up. He can only say a few words (mama, dada, bubba, bye & hey). He can no longer eat or drink due to him aspirating. In result of that he had to get a G-Tube placed. He gets chocked a lot, which requires to be suctioned, due to him not being able to cough up secretions and clear his air way like normal. Jase started having seizures about 3 years ago. The seizures have got better with medicine. He struggles with getting sick a lot due to low immune system. We feel so bad for Jase as he has to go through so much.
About Niemann-Pick Type C
Niemann-Pick Type C (NPC) is a rare genetic disorder. NPC blocks the bodies ability to move cholesterol inside of cells the right way. It causes severe trauma to the brain and body, creating a whole list of horrible things in kids that no child should have to face- dementia, seizures, choking, not being able to talk or move at all, and then passing away. NPC is also called "Childhood Alzheimer's disease". Without help, Jase will experience horrible things one after another for the rest of his life, and there will be nothing we can do to stop it. We know for Jase that time is of the essence and he cannot wait. We have to act now if we are going to help save his life.
Saving Our Son with Your Help
There is hope for Jase in a treatment, called VTS_270, to slow down and hopefully one day stop the damage of NPC. It's working really well in little kids like Jase. We've been working hard to get this closer to home for Jase but unfortunately we have not been able to get any closer than Chicago, IL.
So our only option to get Jase this life saving treatment in time is to travel to Chicago. We have been traveling here for 3 years now. This comes with heavy costs that we cannot carry alone. We travel to Chicago every two weeks to the hospital for this spinal infusion. We have to pay for gas to drive there, food, hotel rooms and even more. The Rush hospital that can provide the treatment to Jase does not accept our insurance. So if there is something not covered at the hospital we will have to pay out of pocket for it to get Jase what he needs to help him live.
Rus University Hospital in Chicago is the hospital who is able to help Jase right now. But, like I said, it cost a lot of money to do this every two weeks. We are asking for your support to please help save Jase and continue for him to get this much needed treatment. Anything you can give will help us to save Jase. We would like everyone to keep us and especially our baby boy in your prayers. ONLY GOD can heal Jase and all the NPC kids. We would like to say thank you and God Bless to everyone who helps us save our little boy. If it wasn't for you we could not do this!
We hope and pray every day that a cure will be found soon!
You can follow Jase's journey on Facebook at Race for Jase's Cure!
Thank you!!
Enjoy these pictures of Jase and his family/friends. I will include some older pictures of when Jase could sit up, crawl and play by himself.
