
Support Jay's battle with Creutzfeldt-Jakob Disease
Donation protected
Starting in August Jay had a slight hand tremble, by September a hand spasm and dizziness. Come October 13th, Jay & Ronelle thought Jay was having a stroke by the added confusion, and numbness in his right side. MRI, Ct and a battery of heart tests came back clean. A week and a half later he was worse so Ronelle rushed him to the VA ER in Pitt where they ran an MRI with contrast and ordered a huge battery of tests. That Friday neuro called and said “MRI with contrast was abnormal be here monday morning”.
That was 4 weeks ago. 4 weeks ago they were told “ no it’s not the common things. This is NOT MS, NOT LYMES, NOT PARKINSONS. Etc” they did an EEG, another gigantic panel of blood work and a Lumbar Puncture. Unfortunately, the person that ran the LP forgot two crucial tests so a week later they ran those two and arranged for Jay to go to rehab while they waited for the results of the last two tests.
This past Tuesday they came back and confirmed what they knew in their minds it would say but in their hearts they were hoping against.
Jay has a very rare, non curable, none treatable, rapid neuro degenerative disease called Creutzfeldt Jakob Disease or in short CJD. There are different types. Sporadic, Familial, or Iatrogenic (VERY rare, almost non existent in the US. you get through meats, or surgeries like cornea or brain surgery. He has had neither) The type they believe he has is sporadic. It has no rhyme or reason that they have discovered. For his age about 1 in a million people get it a year. It is VERY fast. In August he was riding a bike and now he is completely bed ridden. It’s extremely hard for him to speak, he gets confused and has issues with short term memories. The spasms are now in his entire body.
Over the last few weeks Ronelle has had to choose between at her job or being by Jay's side. During this incredibly difficult time, any donation, big or small, would make a world of difference in helping ease the financial burden. Ronelle would be able to stay with Jay day-to-day without the concern of utility bills, living expenses, gas to travel from Uniontown to Morgantown, any medical bills that will be coming in during this stay, and help provide for their boys.
Your generosity and prayers mean the world to them as they navigate this unexpected journey. They are so grateful for the outpouring of love and kindness you have already shown them. Thank you from the bottom of our hearts.
Organizer and beneficiary
Rebekah Berg
Organizer
Morgantown, WV
Ronelle Friend-Barr
Beneficiary