Chance M. - Quilt Finished in 2005

Born: July 28, 1993

Illness: Mitochondrial Disease

A Thank you from Chance's Family!

Written January 25, 2005

THEY ARRIVED TODAY!!!!!!!

As I type, all three kids are snug in their beds, wrapped in their amazing, beautiful quilts with their little heads on their wonderful pillows  :-)

What an awesome experience to open the boxes and see and feel the love that went into each one of them.  I am absolutly blown away.....they were amazing in the pictures, but 10 times that in person.  The kids and I all sat stunned as we pulled each one out of the box and then spent forever looking at each square, one by one.  Each one of their spirits.....the little things that make them who they are......were captured so amazingly.

We then sat with their dad tonight when he got home from work and shared it all with him too.  The smiles in this house today were huge and all our hearts deeply profoundly touched.  Thank you from the bottom of our hearts and souls.

BIG hugs,

Heather M., proud mom to Chance, Madison and Abigail

Chance's Story

written by mom Heather

Chance came into the world after a normal pregnancy but a complicated labor and delivery that resulted in eating issues due to forceps causing jaw damage. Eating issues were resolved quickly and he was in the 95+% for height, weight and head circumference which was what the docs blamed his sometimes slow development on. Early development was always at the late end of normal.

At 3 he was diagnosed with a speech delay, at 4 years with a fine motor delay; at 5 with Pervasive Developmental Disorder or High Functioning Autism; at 6 with a congenital brain abnormality, Seizures, Learning Disabilities and Tourette's; at 7 he had a stroke and neurologically regressed culminating with him going into a catatonic state near the end of 2000.

In early 2001 we traveled to Cleveland to see a Mitochondrial Disease expert and he (and his sister) were diagnosed with it. Mitochondrial Diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised.

It was during this visit to Cleveland, that his Lactic Acidosis and Carnitine Deficiency were also diagnosed. In 2002 he was diagnosed with Atypical Migraines, began to lose muscle mass and tone in his upper body, and was diagnosed with a gross motor delay, Mitral Valve Prolapse with Regurgitation, and started having breathing issues.

In early 2003 he was diagnosed with Tracheobronchomalacia, chronic lung inflammation and micro-aspiration syndrome, all apparently related to the loss of muscle mass and tone that had been progressing since 2002, and all very rare and difficult to control. In late 2003 we traveled to Rochester, Minnesota to see another Mitochondrial Disease expert and a number of other specialists and during the 3 weeks we were there he was further diagnosed with Delayed Gastric Emptying and a spastic bladder. While his sister Madison has previously always been considered the most affected we learned during this visit that Chance now is the most affected of the three and with his seizures and GI issues is most at risk for a faster progression of the disease. While overall we received no good news while at Mayo, we received a lot of positive news in that the doctors there had ideas and thoughts on treatment that we hope to slow the progression of things. We'll be going back soon for further testing and appointments and hope to begin seeing some improvements overall.

In the 4 years since we seriously started trying to determine and treat his issues, Chance has been through a great deal and has always handled it with incredible heroism. He's been through many tests including MRI's, a skin biopsy, numerous EEG's, EKG's and Echocardiograms, a Bronchoscopy, Pulmonary Function Testing, Exercise testing, and too many blood draws to count. He's been in therapy's since he was 4 and has been through 3 different school settings attempting to find one that works for him. He's faced each new challenge with incredible dignity and grace and we are very very proud of him.

It was decided to homeschool Chance for the 2002-2003 school year and for the first time we saw some progress academically, very very slow progress, but progress nonetheless. We've continued homeschooling for the 2003-2004 school year and honestly don't see this changing anytime soon. Not only do we see progress finally, but there is a peace about him that had never been there before. He feels safe, secure and not overwhelmed all the time. He works so very hard to learn and wants to desperately, however his many neurological issues significantly impair his ability to. He is a bright child though and very scientific in nature, and while still very very delayed academically (1st grade reading/writing and 3rd grade math) we continue to see the desire there and watch him put forth ten times the effort another child would have to.

He adores his sisters and family and truly hates to be away from home unless one of his sisters is with him. He does love visiting his grandparents and spending time with the animals anywhere he might be.

Chance will continue to have to have tests and see the doctors throughout his life, will continue to take many medications every day, and will continue to amaze us with his courage. Chance has been and continues to be a delightful child with a unique perspective on the world. He makes his dad and I so very very proud and is the light of his sisters' eyes.

Written by mom Heather in February 2004