I’m updating our story as so much has changed. With very little answers.

We are staying positive and hopeful 2026 will be our year we will figure this out!

Waiting on the big genetic testing and after we get that back on to Michigan to see the Lipodystrophy Specialist.

Emberly has to spend two nights in the hospital to have her seizures monitored.

My husband was supposed to go back to work but he can’t. He worked from March to August and it worsened his condition. It increased his syncope epsiodes and made his lupus harder to manage. We can’t risk any illness with his WBC count being so low and being immune compromised. He has zero body fat left. He needs to relax and rest but saving this farm and helping our kids takes priority.

This has put us in a very tight place with our business and farm. We never imagined coming back to Wisconsin and being given the opportunity to purchase this Orchard and watch the magic and beauty of what it brings to our family and the community to have it hang in the balance.

We’ve prayed, we’ve begged, we’ve asked for forgiveness for any and all past sins, in previous lives.

I need my husband and children back to some resemblance of normal. When I fell in love with my husband I let go of everything, and he became my rock. The one I lean on when the world gets to be too overwhelming.

We have had to increase our go fund me as my husbands condition isn’t improving and the next two months are filled with 7 or more doctors visits each week. Sometimes 4 in one day.

I’ve postponed my physical therapy and neurosurgeon appointments to the side for now so that I can put my everything into the business and getting our family the help they deserve.

We won’t give up but living on one income coupled with so many appointments and driving has kept us in an extremely tight situation. So we are asking everyone to please share our go fund me. If you don’t like that platform we also posted our other links.

How it all started:

We are The Graves Family and our children are dealing with a rarely diagnosed medical condition called PANDAS. (Pediatric AutoImmune Neuropsychiatric Disorders Associated with Strep Infections) Their mom is also battling 9 months of strep and a brain cyst that could be a tumor. That is causing her to loose her vision m, balance, and quality of life.

Our life was turned upside down in August 2023 when our three children started to exhibit behavior way out of their “norm”. After many frantic phone calls and messages I was advised to take all the children to their primary doctor to have Rapid Strep tests. Without the normal sore throat, cough, and fever all the doctors were shocked when all three kids were positive for strep. Their only symptoms were neurological in nature, pointing to swelling in the brain from the strep infection that had been hiding unchecked in their bodies for over 2 months.

With this illness the children are dealing with extreme separation anxiety, OCD, food aversions, tics, hyperactivity, choreiform movements, Akathisia, so many different sensory processing abnormalities, and hallucinations.

Tyden is on long term antibiotics and the girls have both been on numerous rounds of antibiotics. The strep just keeps coming back. Now that we know what the classic signs are of PANDAS we can see that this may have been something Tyden has been struggling with since he was 3/4 years old.

I’ve even been hit with Strep and done a round of antibiotics. There are vitamin deficiencies that have to be corrected, and tons of probiotics to take (specifically ones that don’t contain strep).

Our children do not have regular sleep schedules as nightmares, bodies that don’t calm down at night, and severe joint pain make it extremely hard to sleep or even get a restful sleep.

I have been taking care of the children, their schooling, and doctors appointments. While Tyler has taken a leave of absence from his job as an Electrician to take on all of the responsibilities of the farm, orchard, store and deliveries while I focus completely on getting the kids back to their normal.

Tyden is waiting on ENT Specialists at Children’s hospital in Madison to have his tonsil removed, again. This will hopefully help with his obstructive sleep apnea that is causing him to stop breathing multiple times each night. That is scheduled in February, hopefully he’ll get in sooner!

Emberly gets to see a more local ENT, this week and we should know more about her tonsil situation soon.

We are asking for everyone’s help and support in our time of need. The specialists the kids have to go to are not accepting new patients at the moment. Which leaves us with the only other option in the state of Wisconsin being an out of Pocket PANDAS specialist in Port Washington.

You can read our story progress from all of our updates. Thank you for taking the time to read this.