Christmas 2010

Modern Merry Squares Christmas Card

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One year ago today

One year ago today, Nathan was diagnosed with children's interstitial lung disease. He was admitted in to the hospital immediately with pneumonia. It was the last day that Nate would ever come home. We had all optimism that he would come home but his disease was the most rapid progression the doctors had seen. I spent the next 49 days with him everyday at the hospital. I slept with him in the bed because he would not let me leave his side. I would have to wait until my mom and dad would come so I could take a shower. He didn't like the nurses either. The would take his temp under the arm which he absolutely hated. Nate was a fighter and he fought every day of his life to be healthy. I love you baby and miss you bunches.

Mitochondrial Disease

The Monday before Nathan died he had a muscle biopsy to test for Mitochondrial Disease. I talked with his pulmonologist on Friday and he confirmed that he had consistency with Mitochondrial Disease. They are sending the muscle tissue for further testing.

Following is some info about Mito from www.mda.org

Definition - a group of diseases that affect the mitochondria, tiny energy factories found inside almost all cells, and interfere with the function of muscles. The group is comprised of Kearns-Sayre syndrome (KSS) ; Leigh's syndrome ; mitochondrial DNA depletion syndrome (MDS) ; mitochondrial encephalomyopathy, lactic acidosis and strokelike episodes (MELAS) ; myoclonus epilepsy with ragged red fibers (MERRF) ; mitochondrial neurogastrointestinal encephalomyopathy (MNGIE) ; neuropathy, ataxia and retinitis pigmentosa (NARP) ; Pearson syndrome; and progressive external ophthalmoplegia (PEO).

Cause - a defect in either a mitochondrial gene or a gene in the cell nucleus that affects the functioning of the mitochondria

Onset - varies according to disease

Symptoms - vary according to disease; in general, nervous system impairment, eye problems, cardiac abnormalities, skeletal muscle abnormalities, and disorders of the gastrointestinal tract

Progression - varies according to disease

Inheritance - if defect is in a mitochondrial gene, inheritance is from mother only; if in a nuclear gene, it depends on the gene and is not restricted to maternal inheritance

I've been researching Mito for some time now since I always felt that he had this disease. The closest I can come to a specific diagnosis is NARP and Leigh's Disease.

NARP: Neuropathy, ataxia and retinitis pigmentosa

Onset: Infancy or childhood

Disease characteristics: May cause vision problems, lack of coordination and mental retardation. This syndrome may represent a less severe form of MILS.

Leigh's syndrome: Subacute necrotizing encephalomyopathy

Onset: Infancy; progression can be fast or slow.

Disease characteristics: May cause brain abnormalities, vomiting, seizures, feeding difficulties, heart problems, epilepsy, speech difficulties and muscle weakness.

I'll list some links that have important information for Mito and chILD.

My name

My birth name is Matthew Nathan Wright but my mommy and daddy called me Nathan. When our adoption was finalized, I would have officially became Nathan Daniel Grussing. We decided that a piece of paper does not say who I am so I was always called Nathan Daniel Grussing. Forever - I will be remember as Nate the Great!

Nathan's Obituary

Matthew "Nathan" Wright, 3, died Sunday, May 4, 2008, at Children's Hospital in St. Louis.

He was born Jan. 7, 2005, in St. Louis, surviving are his adopted parents-to-be, Danny and Leslie (Seaton) Grussing of Wood River;

maternal grandparents, Bill and Margaret Seaton; paternal grandparents, Ted and Joan Gresham; paternal great-grandparents, Bud and Carley Gresham;

maternal great-grandmother, Margaret Paris; two sisters, Crystal Setar and Mary Pruett;

three brothers, Walter Michel, Christopher Setar and David Wright; and several aunts, uncles, cousins and friends who loved him dearly.

Nathan lived a life of joy and happiness. His smile melted everyone's heart.

Visitation will be from 10 to 11 a.m. Thursday, May 8, at Marks Mortuary in Wood River,

where the 11 a.m. funeral service will be held, with the Rev. Tim Gill officiating.

Burial will be at Rose Lawn Memory Gardens in Bethalto.

My first post

Thank you for visiting this page. I started this page in memory of my angel in heaven, Nathan. This page will help with my grief as a I live each day without him but most importantly to educate everyone on Children's Interstitial Lung Disease (chILD) and other disabilities Nathan lived with.

I should have started this blog when Nathan was a baby but I'm hoping to look back over the last 3 years and talk about his life. I also want to look ahead to win the war on chILD. Nathan may have lost a battle but his Mommy and Daddy are determined to win the war.

So please check back often as I update this blog. My next blog will be about Nathan's life.