Dye It For Dravet

Renee Scharff

May 22, 2023 12:00am - August 31, 2023 11:59pm

My Fundraising Page

Jaxson's Story

It all started a few days before Jaxson's 6 month birthday, when our whole world got turned upside down.

The day was like any other, dropped Jaxon off at the sitter and went to work. By the grace of God, I was able to leave work early that day and went to go get Jaxson before heading home. I walked into Jaxson having a tonic-clonic seizure also known as a grand-mal seizure in the arms of his sitter. This is where the body stiffens and there is jerking, shaking and loss of consciousness. The seizure had only lasted a few minutes, but since it was our first, and we immediately called 911. Our amazing paramedics assessed Jaxson and told us to montior him at home. We had decided to call Cincinnati Childrens Neurology department and ask for help with next steps and they reccommended Jaxson to come in for evaluation. We spent the next 24-48 hours getting CAT scans and an EEG, for them to determine it most likely was caused by a spike in fever and hopefully just a one time case.

That following Friday (Jaxson's actual 6th month birthday) we went in for a routine 6 month check-up which included his 6 month vaccines and then I headed to my boyfriends parents house afterwards. They were helping me, by keeping an eye on Jaxson so I could get some work done. It was about time to leave, when they had let me know that Jaxson was really fussy (unlike him to be fussy) and had not eaten all day (also not like him). My gut told me I needed to stay for a few more minutes and wait for one of them to ride home with me. Thank the Lord I listened, as it wasn't a minute or two later, Jaxson had started having his second seizure. We were told by the hospital to wait 5 minutes before calling 911, so I turned on my camera and watched the clock. At 4 and half minutes I decided to call. Paramedics arrived quickly and off we went to our local hospital. Jaxson's seizure lasted a total of 35 minutes and was stopped with 3 different emergency medications. Our local hospital had Cincinnati Children's come and transport us to their hospital. Once back at Children's, Jaxson endured more testing, with another CAT scan and spinal tap. Again they believe the seizure to have been brought on by a fever that he had gotten from the vaccines. This time they did put in an order for genetic testing and sent us back home.

Once we were back home, I took off work for the week to keep an eye on Jaxson. During that week I had noticed he was having some jerking of his arms and legs while also dropping his head, some of the time. I sent a video to our neurologist who immediately wanted us to come back in for a 24 hour EEG to watch his brain activity. After the 24 hours they had determined Jaxson had epilepsy and was experiencing myoclonic seizures. Our neurologist pulled us aside to go over other diganoses she had concerns about while we were still waiting for the genetic testing to come back. One of those diganoses was Dravet Syndrome.

It was about a week later, the testing was back and it was confirmed that Jaxson did indeed have a gene mutation and was diganosed with Dravet Syndrome. What is Dravet Syndrome? Basically, it is a genetic disorder that causes epilepsy.(We do not suggest googling) Is Dravet Syndrome hereditary? Yes it is, as it is a genetic disorder. As Jaxson's parents, we do not have Dravets, so we did not "pass" it to him. We would have to strongly consider having other children, as this could be the outcome for any future children as well.

When you are blessed with meeting our amazing boy, from a stranger's point of view, you would have no idea the battle Jaxson is undertaking. Our journey has really just begun as Jaxosn is just 8 months old and we are learning more every single day. Currently, Jaxson continues to deal with his myoclonic seizures, daily and we are working with his neurologist to find a combination of medications to help bring those down to zero. We do not know what our future holds. We are truly taking everything day by day. There are many case studies and possible treatments in the works for children like Jaxson, and that is what this fundraiser is for. We pray everyday that Jaxson is able to enjoy all the things life has to offer him and that the world is in the palm of his hands.





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My Supporters

  • Anonymous Prayers for you and your family. June 2023
  • Anonymous Donation made on behalf of Kim Jewett and Gloria Burns June 2023 $50.00
  • Christine Meinders June 2023 $103.59
  • Mark Harvey June 2023 $50.00
  • Stacie Wood You’re awesome Jaxson. Love Grandma Stacie and G Pop. June 2023 $255.00
  • Tom and Colleen Plaut ❤️ May 2023 $1,000.00
  • GroundSystems, Inc June 2023 $350.00
  • John Mary Davis June 2023 $258.97
  • Stacie Wood You’re awesome Jaxson. Love Grandma Stacie and G Pop. June 2023 $255.00
  • James Sowar Good luck Jaxson! June 2023 $250.00

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