Cameron Hurst

Cameron was born a healthy baby boy on September 4, 1997 in Kirkland, Washington, USA.  His apgar scores were 8's and 9's.  He weighed 7lb and 1oz.  I remember staying up that night with him, the only thing on TV was Princess Diane's Funeral.

He was developing ahead of schedule, at two months he would lay in my arms holding his bottle, at four months he was even starting to sit up with a little bit of help.

Things started going down hill at five months when he got a low-grade fever.  The following week he was diagnosed with an ear infection and was prescribed amoxicillin.  The next week it was a vomiting spell.  Throughout this whole ordeal he would sporadically would stiffen out and scream in a cry like I had never heard before.  I knew as a mother something was not right so we took him to the emergency room at Children's Hospital, but they could not explain why he was doing any of this.  From the start of his fifth month, all he did that whole month was sleep.  He would not eat much and did not move much either.

A couple days before he was 6 months, I woke up to get our boys ready and to take my husband to work.  I noticed that Cameron was shivering a little like he was cold and his eyes were gazing upward.  I pointed it out to my husband and we both agreed that he had been sick for to long and I was going to take him to the doctor again.  An hour went by and his eyes shut and he began to shake much more violently.  I immediately called the nurse and she said bring him in right away, so I did.  Once we arrived they put him on oxygen and called 911.  An hour and 3 IV's/Valium/intubations later he was transported to Children's of Seattle.

We spent 2 weeks at the hospital, and in that time he spent 3 days in ICU (for a seizure with apnea) and had numerous EEG's (showing that he had a lot of abnormal brain activity and seizure activity.) He also had a spinal tap, CAT Scan, MRI (he had swelling and lesions in the basal ganglia and thalami), and a swallow study (revealed he could not suck or swallow well enough to keep himself feed leading to the placement of a g-tube.) The neurologist decided from what they were seeing externally (his right side of his body was not responsive and he was always wiggling but it was rhythmic) and internally that this was a possible mitochondrial disorder.  Which meant the next test was to be a muscle biopsy.  At this point there was nothing more they could do but wait for the results of the biopsy.

We took my son home and we took care of him the best we could.  My husband and I found a specialist in child neurological disorders in Michigan and through my husband's job we arranged relocation so Cameron could see him.  We called Seattle and received the news of the muscle biopsy.  Cameron was completely depleted in Complex I, only a small fraction of Complex III was left, and Complexes IV & V were showing decreased activity.  When we saw the neurologist for the first time and relayed the test results to him, he told us that his clinical diagnose was Leigh's Disease and that our son had only about 3 to 6 months.  He hooked us up with a pediatric hospice.  They were wonderful.

My little baby tried his hardest to shine through this disease; he truly was an angel.  We lived everyday as if it was his last because we were told that when Cameron's brain stem was effected his breathing would be affected and he would go quickly.

The day before Cameron passed on we had a few clues telling us what was about to follow.  His feet and hands were freezing, the next minute he had a 103.8 temperature, he didn't open his eyes the whole day, he looked the most peaceful that I had ever seen him look, and he was talking quite a bit.

I didn't sleep very well that night.  My husband had to be to work earlier than normal that day so I woke him up at 4 am.  I went and got Cameron and laid him in bed with me.  I suddenly awoke at 8 am and his breathing was very rapid and shallow.  I knew he was going.  I awoke my 2 1/2-year-old and took him to the neighbors.  I held my baby in my arms with the oxygen mask over his month.  I told him through my tears that we loved him and I didn't want him to suffer any more and it was okay for him to go.  His shallow breathing turned to gasps for air that grew farther and farther apart.  Before he took his last breath he opened his eyes and looked at me as if to say goodbye.  This all happened in a matter of one hour.  He died at 9:05am on July 9, 1998, at the age of 10 months and 5 days.

I wanted to share his story because this precious baby gave enough gifts and love to last a lifetime.  I hope that even though he is gone that he will still be able to touch people's lives.  My husband and I had arranged before his death to donate whatever organs were needed to help research for Leigh's Disease.  We spread his ashes back in Washington in the Puget Sound.  We felt this was the best place for him, so we would be able to visit him, and he would be where life is always abundant and peaceful.

- The Hursts

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