We are in a race to save our son’s life and we are asking for your help.
Jase is 3 years old. He loves to play outside, go swimming, ride the ranger and play with his big brother. 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 we would do and care for Jase how he wanted us to. We trust and give it all to the Lord.
Jase was able to sit up and crawl but he has got very clumsy with both. He can only sit up for a short amount of time alone and hardly ever crawls anymore. He cannot walk or stand up. He can only say a few words (mama, dada, bubba, bye & hey). 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 or stop the damage of NPC. It’s working really well in little kids like Jase. We’ve been working hard to get this for Jase close to home. However, this is possibly months away and we cannot wait any longer without risking losing Jase.
Our only option to get Jase this life saving treatment in time is to travel out of state, but it comes with heavy costs that we cannot carry alone. We’ll have to travel every two weeks to a hospital for months. We will have to pay airlines and gas, hotel rooms and even more. The hospitals that can provide the treatment to Jase right away do not accept our insurance. This is a devastating blow to our family, and we will be paying out of pocket for hospital costs every time Jase gets what he needs to help him live.
Rush University Hospital in Chicago is the hospitals who is able help Jase right now. But it cost a lot of money to do this every two weeks. We are asking to for your support to please help save Jase and continue for him to get this 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!
Kayla Miller sent this her Daughter has NPC also.. please read..”My daughter, Kamryn, started showing neurological symptoms around the same time as Jase. Unfortunately, we were not able to get treatments until she was eligible for the trial at four years old. For over two years, we had to watch our daughter decline. She was declining in her abilities to eat, walk, talk, etc. It was heartbreaking to sit back and watch changes take place and not be able to help her. Once treatments began, we noticed changes. Kamryn has improved in many areas! Most importantly, her quality of life is much better. I believe that without these treatments, life would not be the same for her. In fact, I’m not sure that she’d still be here with us today. The treatments won’t be easy for their family, but they will be worth it! The benefits for Jase’s quality of life are well worth any donation you can make.”
We can also below that put in links to articles to show ppl how much they can help:
- Alexandra Loureiro
- Cynthia Canup
- Nazeer Jabbour
- AWAD QUMSEYA
- Breana Patterson