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Gabriel & Diego's Story

 

From: "Jennifer Guanco"
Sent: December 11, 2004

Jennifer Guanco's family The picture above of my husband and our 2 boys was taken the evening our youngest son Diego (middle) came home from the hospital this past January. But I don't want to get ahead of myself . . . our story starts further back.

Sixteen years ago, my 24 year old brother died of a massive cerebral hemmorage in his sleep. He had been seeing a neurologist for petit mal seizures from un-identified lesions in his brain. The problem was, this neurologist only did 1/2 head arteriogram and the hemmorage was from an aneurysm on the OTHER side of his brain. At the time we were so shocked and lost that everything was a huge confussion. But 2 years later, when my Dad had a gran mal seizure the picture became clearer. My dad was diagnosed with a HUGE aneurysm behind his left eye . . . and a number of CCMs. He had surgery for the aneurysm and he is alive an well today, and due to the family tie they did an arteriogram on me and found nothing. We were told that I might or might not carry this on, but it seemed to be just in the males of the family.

Fast forward to Memorial day weekend 2002 when our 2 year old had a gran mal seizure and was rushed via ambulance to our nearest hospital in Kirkland, Wa. We explained the family history in detail but they said it was probably just a febrile seizure and sent us home. I can't tell you how loud my mother's instinct bell was wringing WRONG! WRONG! as we left the hospital that night only to return the next day again! It is amazing how fast an ER staff will move when they take a CT scan and see bleeding in the brain! Gabe was transported to Harborview trauma center by helecopter within 20 minutes of his CT that night. Over the next few months we struggled with getting his seizure meds right, and a host of other things.

The specialists at Children's hospital in Seattle decided to wait 8 weeks to do his surgery and miraculously he was out of the hospital 5 days post-op. Children are amazing healers! We thought our ordeal was over, but they wanted to do genetic testing of Gabriel with Duke University, and also MRI his younger brother Diego. At the time, we found Diego had a few CCMs as well, but he was completely non-symptomatic, so he was kind-of put on the back-burner so to speak.

The following Spring we moved to Phoenix and everything seemed great. Gabe had a good MRI the month before we moved, he was without seizures since his surgery, and, although the genetic study results from Duke confirmed that he DID in fact have the KRIT1 mutation he was doing well. Then our world crashed down around our heads last December!

I woke that morning feeling something was off, and prayed that God would hold us safely in his hands. My husband Robert came into the bathroom to tell me something was wrong with Diego (then 2 1/2) and that he couldn't walk, his left leg kept crumpling out from under him. It stopped until the afternoon when he started to fuss while playing in the living room and I looked over and realized "he's having a seizure!" We rushed him to Children's hospital in Phoenix where he was diagnosed with a large bleed in his motor strip. Well, we spent Christmas and New Years at the hospital . . . a total of 4 weeks in the ICU until his surgery. It took a total of 5 different anti-seizure meds in combination to stop his seizures, but his neurologist Dr. Allan Kaplan, and his neurosurgeon Dr. Moss have brought him through as such a miracle! We thank God for them every day! Last month Diego was given the thumbs up after an MRI until next year . . although still on anti-seizure meds.

The hard part about being a mother children with CCM is that it is always out there . . . waiting. They have a 4.5% chance of a new bleed each year. It is never over. In fact, as I write this, I am waiting for a phone call from their neurologist to discuss Gabriel's MRI taken yesterday. They send a copy of the scans home with you on CD, and when I opened it up top look at it and compare with his last scan it is obvious he has had a bleed. Whether it is resolving itself or will require another surgery. It is SO hard to feel so alone in this fight. Every night I tuck in my boys and thank God for them praying for healing, and take each day as it comes.

Jennifer Guanco
Phoenix, AZ