Re: karlee's appt with dr.shoffner

April 1, 2004

Hi Davonne, My son was diagnosed 5 1/2 years ago with, epilepsy,

reflux, failure to thrive, developemental delays, and white matter

disease was diagnosed through MRI, 6 months later he had another MRI

and we were told it spread to his gray matter, his neurologist told

us this was a serious and complexed disease. We were referred to the

Leukodystophy Foundation, they have an online site,half a year later

he had a muscle biopsy, and was diagnosed with MITO. He also has pdd-

autism and scoliosis, he is fed via g-tube, and is on a pulse ox

monitor and apnea monitor when sleeping. He has a MRI every 6 months

since his first MRI, and by the grace of God his white and gray

matter has not deteriorated anymore since his 1st two MRI's. HE is

now 7 years old, and will turn 8 years old this coming June, my son

has autistic support at school but is intergrated in a 2nd grade

class. He is doing very well, and surprising all of his doctors and

teachers and family!! So there is always hope. HE did start out in

early intervention where he recieved alot of occupational, physical,

speech and feeding therapies, then in preschool we added behavioral

therapy, and sensory intergration therapy, and water therapy. And as

a family and i'm including his siblings, we learned how to help

Matt. With the help of all his specialist, therapist, nurses,

teachers and our family, and expecially support groups like this

one , the Muscular Dystrophy Association, the Leukodystrophy

Foundation, the United Mitochondrial Disease Foundation we have

learned so much. The best prognosis we were given, by Matts

neurologist was: LOOK WHAT MATT CAN DO TODAY, and we say that every

morning when we wake up and every night when we go to bed, and it

really helps us help Matt be all he can be. We had parent teacher

meeting last night and we were thrilled and smiled when his teacher

told us where Matt is academically, (he is still developementally

delayed) she said we are the only parents she has ever seen smiling

when told their child is below average, and my reply to her was He is

alive that is what is important to us, she smiled and fully

understood where we were coming from. WE will keep you and Karlee

in our thoughts and prayers, and remember miracles really do happen,

and those miracles are our children!!!! Barb, matts_mom96

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