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Financial support from NMDP helped JJ's family when they needed it most

When JJ was diagnosed with congenital neutropenia, his family faced ongoing hospital visits and an uncertain future. Thankfully, JJ received a life-saving blood stem cell transplant and is now thriving. With the help of NMDP patient assistance programs, JJ's family could breathe a little easier and focus on his care. Connect with NMDP on social: https://www.facebook.com/nmdporg https://www.instagram.com/nmdp_org https://www.twitter.com/nmdp_org https://www.tiktok.com/@nmdp_org https://www.linkedin.com/nmdp 00:00 Meet JJ 00:34 JJ’s Diagnosis 01:22 Financial Challenges 02:34 Financial Assistance from NMDP 03:29 Life Post-Transplant

NMDP

2 weeks ago

- JJ is very rambunctious and outgoing. Definitely shy at first. - A ball of joy. He loves tubing with his sisters. Loves playing with his dirt bike toys and jumping on the trampoline and chasing the goats around now that we have farm animals. - My name's Anthony and I like to get called JJ. I like to ride my dirt bike and play with my friends. When I grow up, I wanna be a race car driver and mechanic. - When we first got the diagnosis of JJ's symptoms, I was scared. It's the only thing that sca
red me in my life. It was terrifying. - [Danielle] It was a lot, it was stressful, it was heartbreaking. - Six months in of him being born, he kept on getting sick, so he went to the hospital every time he got sick and they finally said he needs to have a transplant to take care of him. Otherwise, he had to be on a neutropenia shot for the rest of his life. - It was just kind of always in the back of my mind that he could possibly have what I had, neutropenia. They never confirmed or denied that
it was congenital, that I was born with it and being transplanted, there's no way to obviously go back and figure that out. I remember what I went through and I wasn't ready for my baby to go through that yet. - I had her move into the hospital with JJ, so she wasn't gonna work no more. She was gonna stay there 24/7. I didn't want her driving back and forth. - A lot of sacrifices were made on both of our ends and my loss of income as a hairstylist in California, we don't get disability or FMLA.
- I worked 60 plus hours a week. I was always at work or at the hospital or at home taking care of the dogs, commuting from San Francisco to Oakley to Martinez like every day. - It was hard with my husband being across the bay, having to go to work five days a week, keep health insurance going. - Really hard not being able to be with him because that's all I thought about at work. It's an emotional roller coaster that you're going through. Financially, it's a hard hit that you don't realize unt
il it actually happens to you. - Digging ourselves deeper and that snowball effect of are we ever gonna get out of this hole? As the medical bills started coming in and the PGE still needed to be paid and the mortgage while living in the area on one income. - I was going to do whatever it took to make sure he was gonna be taken care of and my family was gonna be okay. It was a tough situation. - After we found out that we were approved for the grant to provide us with some financial assistance,
it definitely relieved some of the financial stress that we were enduring. - Just to drop my shoulders and sleep comfortably and not worry about where I'm gonna come up with this next 100 hours of overtime that I was gonna try to make. When we got our grant, I was actually able to move into the hospital for a month. - The support that we received made us relieved and we're very lucky to have a lot of support. - The grants is what saved us, honestly. Just a weight lifted off 'cause it was my son'
s life right on my shoulders now. - Fortunate enough, not only did he have a perfect donor, we had the picture perfect transplant as well. He didn't skip a beat. The rambunctious sweet boy that he is remained in good spirits pretty much the whole time. - He's doing really well. He loves his new school. He loves our new house. He helps me work on my race car. He races dirt bikes. Helps his sisters. He's a great little and big brother. Annoying one, like usual. - We started to see a glimpse of som
e normalcy in our life again. Being able to take him to his favorite drag races and he got to hear all the vroom vrooms and watch all the cars and seeing him in his element was something I was afraid I would never get to see. - But he's doing amazing now and I can only be so thankful for that.

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