JT's Journey with Stroke and Kidney Disease

Hi, I'm Amanda (JT's aunt), and I want to tell you a story of an amazing 4-year-old.

JT suffered an ischemic stroke (a clot was in an artery in his brain) on 1/14/23. He is 4 years old and suffers from a kidney disease called Congenital Nephrotic Syndrome (CNS). He is now considered by doctors as medically fragile and disabled.

Here is a summary of the kidney disease JT has. It is called Congenital Nephrotic Syndrome (CNS), and there is no cure for this disease. Hopefully, this summary helps to explain why all this is happening and will also inform you of the battle JT is facing.

JT has had CNS since birth, but due to missed test results when he was in the hospital at 3 weeks old, he has been undiagnosed for 5 years. It’s amazing JT is still with us. The prognosis for undiagnosed CNS is very alarming! You can look that statistic up for yourself. I just can’t write it here. But God has graciously spared him so far, and now we are trying to play “catch up.”

Having CNS means that the filters (called glomeruli) in the kidneys are damaged, and they allow certain types of protein to pass through the kidneys- JT loses the protein every time he urinates. Since JT is not getting these particular types of protein, his body struggles to function properly. This is why he had the stroke. He doesn’t have the proper balance of protein in his blood stream to keep his blood thin and arteries from clogging.

JT’s kidneys will fail and the nephrologist has stated JT will have kidney failure by age 9. Nathan and I will undergo testing to see if we are a match for him.

This disease affects so much of JT’s body. Below is the list of specialists that we have been referred to. Most are currently working on treating his condition.

1. Nephrology

2. Cardiology

3. Endocrinology

4. Gastrointestinal

5. Pulmonary

6. Infectious Disease

7. Peds Development and Growth

8. Diet/Nutrition

9. Genetic Testing

10. Neurology *this is currently our main area of concern. He’s still considered at very high risk for other strokes.*

11. Hematology

Please continue to pray for JT even when he leaves the hospital. This an uphill battle and one that we are totally dependent on God to help us fight.

Specific prayer requests/medical issues we are currently facing:

1. The injections/medicines are no longer working. JT’s kidney disease doesn’t allow him to keep protein in his blood, so there is no protein for the medications to bind to.

2. The clot is still there. It’s not clearing

3. There is minimal bleeding in the area of the brain where he had the stroke.

4. There is another partial blockage on the other side of the brain.

5. JT has had 2 other MRIs in the past year, and they weren’t really sure what they were seeing in them. Now the doctors suspect JT has had undetectable minor strokes in the past.

6. JT is at very high risk for other strokes because the artery the clot formed in is responsible for a high percentage of the other blood circulation in the brain. Another way to explain it is the main artery, “trunk,” is what has the blockage; the “trunk’s” “branches” cover a high percentage of the brain’s blood circulation, so the risk of further strokes is further multiplied. It’s because his posterior (rear) cranial artery didn’t develop as fully as possible before he was born, resulting in the anterior (front) carotid artery being his brain's primary blood transport.

7. JT will need ongoing physical therapy, whether inpatient or outpatient. The doctors are still making that determination.

Any funds donated here will be used to help with medical bills and therapy costs related to his stroke.

Psalm 46 - cling to God as our refuge

Luke 8:43-48 - clinging to Christ for healing