Neurological Condition Drs & Testing, Relocation

Meet our 4 year old boy, Wade. He is a bright and energetic happy little guy, but most of all he is silly and loving. He loves T-Ball, playing with building toys, monster trucks and most of all, he loves playing with his 6 year old sister - his best friend in the whole world.

Recently we have received the unfortunate news that he has had the onset of a neurological condition that requires specialists out of state.

Two weeks ago, we noticed our son had involuntary movements in his face, which then moved to his hands and eventually progressed into shoulders and neck. These movements became so pronounced that Wade no longer wanted to do activities where he needed his hands, like building legos or even drawing/writing at school.

Our daughter, who is 2 years older, was previously diagnosed with a rare neurological disorder, and the best neurologists in central FL gave us the "We don't know" answers after extensive testing like DNA, MRI etc. After 18 months of tests and waiting on results and doctors, we received zero insight into her condition. We found a specialist in Maryland at Kennedy Krieger Institute that was working on a study about a neurological condition that sounded a lot like our daughter's, and after a visit and evaluation, we finally received some answers and a plan moving forward.

We are now seeing the same type of uncontrolled movements in our 4 year old son and are taking him up to Maryland to the same Dr. to hopefully alleviate his timeline, discomfort and unnecessary testing that we unknowingly experienced with our older child.

We learned that siblings with the same neurological condition that is already very rare is even more rare... news that is hard to understand why this condition is happening to our kids.

So much is to still be learned about the disorder, and the specialists at Kennedy Krieger/Johns Hopkins have been working on a study for over a decade now and are sharing their research to best help our kids.

Our son has already had a preliminary neurology visit, and now needs additional neurological testing as well as his first trip to Maryland Kennedy Krieger Institute to see the team that specializes in this condition.

We need to see these specialized doctors to understand his needs and make sure he can receive the appropriate diagnosis, which will determine his path moving forward. Although we work tirelessly to provide the costs associated with our children, we need support and help as this is now the second child of ours that needs this care.

Your generosity can make a world of difference in Wade's life by ensuring he receives the care he deserves by providing support for his medical expenses. Every donation, no matter the size, can help him immensely. It's the small donations that add up into monumental help for which we will be forever grateful.

Thank you for your kindness and being part of Wade's support team.

Update 3/28: We have learned that toxic mold can be a likely cause of Wade's movements. Recently, we have moved into a rental home and have uncovered a long history of water damage on the property due to a leaking roof and piping and mold found all over the A/C unit with the last service date in 2016 - a timeline that is unacceptable. We had an extensive inspection yesterday 3/28 end of day for mold with samples being sent to a lab for further evaluation. Cost was $725 due to the higher than average amount of samples collected and sent to the lab. We currently have a Petri dish growing an extremely gross amount of mold and are anxiously awaiting official lab results.

Update 3/29: Mold lab results came back and the mold that is all over the base of the AC unit and surrounding wall is toxic mold. We will be running a mycotoxin test on Wade to determine if he personally has mold toxicity to further understand his condition. The mold testing and mycotoxin testing increased our planned expenses by over $1300.

Update 4/2: We are waiting on one more swab test as more mold was found on the interior of the home and we are waiting to see if that is toxic as well. Wade's EEG is scheduled for 4/12 and his mycotoxin test is supposed to arrive end of this week so we can get him tested for mold toxins inside the body.

4/15 update: Mold lab results came back and toxic mold is inside AND outside the home. We began packing and pulled our bed away from the wall to find that all under the window there is new mold coming in from between the walls from a roof leak that wasn't properly addressed by the landlord. We are forced to move out of the home and also have to replace a lot of our belongings. Still waiting on official EEG results and official mycotoxin results for Wade, and are going in 2 days to Maryland Kennedy Kreiger for additional testing.

Not only do we need to move immediately, we need to replace majority of our belongings due to toxic mold exposure that cannot be properly cleaned like couches, mattresses, certain wood furniture, linens, clothing and even a lot of our kids toys/stuffed animals.

Update 4/18:

Wade's results from his EEG indicate he is free from seizures (Thank you God!).

We began moving out of the home and the more we began to pull furniture away from the walls, the more that was uncovered. All 4 of our mattresses and box spring sets had to be thrown away as well as an entire couch. Many of Wade's bedding and even some stuffed animals had to go, as well as his curtains that were touching a wall and window that had mold on it. Mold was seeping through the outlets on the wall and his bed had mold growth on it. We are moving out this weekend and hope to have a brighter future ahead.

Update 4/25: We rented a U-Haul and moved Saturday, and then movers came on Sunday to gather heavier things we couldn't do ourselves. We have officially transferred over to the new home and have begun working with a medical specialist that can help Wade recover from this exposure. We have ordered a dust analysis kit per the doctor's recommendation, and will gather the last bit of information from the prior house that we can to determine the appropriate treatment for Wade and recovering from this exposure. We are so hopeful that the treatment will eliminate his neurological condition. This will require blood work, supplements, dietary changes and more.

4/29 Update: It was advised to us that additional mold testing should be done in the home after we moved out, and we received updated results that the volume of toxic mold in our kids' bedroom was 11x the safe amount, leaving the air quality extremely toxic to our whole family. Our dog went back to the vet for a checkup and after leaving the home only 3 days prior, his unexplained coughing and wheezing had already drastically improved, and the vet believes mold was the cause. We have completed our initial consult with a wellness doctor to help not only Wade but our whole family medically heal from the toxic mold we have been breathing in for the last 8 months. Bloodwork for all, supplements and detox protocol will need to be administered since the levels of toxicity were so high. Per the doctor, we also ordered a dust kit on the home and results show numerous types of toxic mold found only in water damaged buildings as well as numerous types of bacteria also specifically found in water damaged buildings.

Update July 31: After extensive bloodwork, MRIs and doctor visits, it has been found that Wade has been diagnosed and the mold has impacted him, but also has impacted our daughter as well as me. I will be going through an estimated 18 months of treatment requiring toxic mold detox. The toxins have negatively impacted 5 areas of my brain causing full body inflammation. For standard patients recovering from mold toxicity, their tgfb1 values are between 4-6k, and mine and my daughters are over 18k and Wade's is over 11k. Mine and Annabella's are the highest numbers in his practice this year.

We are hoping the kids will improve quickly in the next few months, but for adults especially with my levels it will take closer to 2 years of continuous treatments, follow up MRIs and follow up labs. We have to continue to purge our belongings that can transfer this mold into our new home and replace with new.