On January 12,1998 Justin was born to a very happy and proud mom (Linda). Justin's first year he was delayed at things but it was pretty much normal. At 10 months of age Justin started physical, occupational, and speech therapy. It was after his 1st birthday things started to happen. Two weeks after he turned 1 he was asleep, he woke up and had stopped breathing he was rushed to the local ER and a bunch of tests were done but nothing was found. I had to argue in order for them to keep Justin over night. The next day He was sent home on an apnea moniter by my request (i kept that moniter for 1 year). When we got home the next evening after a few hours at home Justin went in a seizure. He was rushed back to the local ER and I was told he had a febrile seizure. The pediatrician we had at the time kept telling me that Justin was fine and kids go though things. But I new different something was wrong with my baby. Justin's seizures kept getting frequent so at that time Justin's pediatrician wanted him to see a genetic doctor but she found nothing. So then Justin had a sleep study done but nothing was found there. He was introduced to Dr.Kotagal a neurologist at the cleveland clinic (that was the best thing that happened to Justin) Dr kotagol put Justin on dilantin but Justin's seizures was still happening. He had many EEG's done, It was told to me he has grand mal seizures. Justin has had many MRI's done, It was told to me that Justin's brain is normal but delayed. I had to change Justin's pediatrician because the one he had would not help me. So I changed to one that was a cleveland clinic pediatrician that way I could see any cleveland clinic doctor I thought Justin needed. Justin was still in and out of the hospital for this seizures at one time in the hospital they had took blood and it was something with his Lactate acid that the doctors wanted him to see Dr. Cohen ( Cohen is our hero because he is the one that diagnosed my little angel). Justin had a skin biopsy done but cohen said it would take too long for the results to come in. Justin had a muscle biopsy done and in two weeks Justin was diagnosed with a mitochondrial disorder pyrvate transport deficiency (he was 2 years old when diagnosed) At that time Justin was put on the cocktail which is VitaminB1, carnitor, Co-Q10, lipoic acid, Justin was also on Phenobarbital and clonzepam for his seizures. Cohen has found that with Justin's mitochondrial disorder that the ketogenic diet is best for him so he was also on that which did good. Being on the ketogenic diet Justin was on cal mag zinc 2 and bugs bunny complete. Justin's symptoms was muscle weakness, loss of muscle coordination,developmental delays, G-tube fed, bowel problems,respiratory problems ( Justin has had laryngeal cleft repair surgery due to aspiration pneumonia and loud breathing),increased risk of infection, neurological problems and seizures. Justin has been though alot in his little life he has had 4 surgerys, over 13 admissions in the hospital, A dozon tests were taken and about 10 times to the ER. Through it all Justin remained a happy delightful child. He passed away due to his disorder.The things I can remember the most is he was always smiling, Justin was always my pride and joy in life.He really is my gift from god.I never treated him any differently inspite of his problems. He was a very playful and loveable child.He loved to listen and look at books, watch tv, play with all kinds of toys, listen to music, and go on outings.I took him everywhere I could. He is very much missed and forever will be.I know Justin is healed now and with Jesus. He is doing things he never got to do here on earth.
Justin I will hug and cuddle you again in Heaven when I get there......(Man I can't wait!!)
I found this poem and it's so true....
" LITTLE ANGEL"
I will not forget you Little angel, Precious Child ,I think about you every day
The love we shared, your smile, I think about the happy times and not the sad,
And I treasure every memory Of the special times we had, I'm leaning on God's
promise, Someday we will be together again in Heaven where the best is
yet to be.
Justin you will always and forever be in Mama's heart. I Love you and miss you so very much....Big huggs and many kisses from me to you my lil baby boy
