Introductions

[Guest guest]

I'm , I've been a member on here for several years. I'm a single mom and a grandma.

I have a mito-angel daughter who would be 18 now, and three mito kids. My oldest daughter is 23, and she had mito twins that passed away at four months three years ago this Mother's Day. My daughter just had a new baby boy three months ago. Her and my grandson live with me, she's also a single parent. My oldest son is 22 and he has a baby boy on the way, due in August. My youngest son is 17, and he was diagnosed by Dr. Bruce Cohen in January of 2000. We live in Orange County, California, and we all use power wheelchairs, except for the new baby , he rides on his mommy's lap in his snuggly.

My daughter has dysautonomia, migraines, chronic pancreatitis, IBS, muscle weakness, allergies, neuropathy, excercise intolerance, cyclic vomitting, ADD, endometreosis, and she was just diagnosed with cancer, too, which has mestasticized.

My oldest son has ADHD, seizures, cardiomyopathy, asthma, bi-polar, and is high functioning autistic.

My youngest son had undescended testicles and double inguinal hernias, and he was extremely colicky when he was a baby. He had screaming episodes that would last for hours until he literally passed out until he was 2 or 3 years old. He had night terrors until he was 8 or 9, and severe reflux with projectile vomitting, he was so small he could wear toddler clothes at nine years old. He currently has seizures, dysautonomia, migraines with auras, brain damage on MRI, myoclonus, tremors, GERD, he had a Nissen fundoplication twice, he has a G-Tube, asthma, allergies to everything, his immune system is low and he's always catching something (most recent was viral spinal meningitis), he has pseudo-obstruction, chronic constipation, strictures and erosions of his esophagus, dysmotility, anterior wedging of his neck bones, he easily fractures bones (he's had more than one cast on at a time), ataxia,

blood sugar problems, he wears orthotics from Shriners for his feet and ankles, he has left-sided weakness and he drags his left foot at times, very low muscle tone and weakness, skeletal pain, exercise intolerance, lax joints (he can completely turn his legs and arms around backwards), he has speech difficulties and memory problems, and neuropathy.

I have very severe and chronic migraines with auras, optic atrophy (legally blind and getting worse), chronic pancreatitis which has caused severe damage to my pancreas, blood sugar problems, syncope, hemangioma tumors in my thoracic spine, fibroid cysts and ganglion cysts, IBS, ataxia and spasticity, low muscle tone and weakness, exercise intolerance, SLEs, TIAs, hip dysplasia, lax joints, dysautonomia, asthma, weak lungs (I use a BiPap), mitral valve prolapse and heart problems, tremors, and endometreosis.

My grandson has stridor and laryngomalacia, very high lactic acid in blood, he's colicky, has chronic constipation, and he sweats profusely. He screams for hours as if he's in pain, and he's been losing the few milestones he had passed. His metabolic doc already has him scheduled for a muscle biopsy, and he's only 3 months old.

It is difficult living with MELAS, and watching my children and my grandson suffer from this horrible disease, but I have a very strong faith, and I know that my baby daughter and my grandtwins are all with God, and someday we will be there together without any pain or suffering, and until then, I get through it with the Lord's help, the love of my children, and support from this email group.

Becca

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[Guest guest]

Thanks !! I have found a lot of comfort with the group already. Hailee has been in my prayers and will continue to be. I hope she is doing well.

Meagan, Mom to Sophia (11 months)

www.caringbridge.org/ky/sophiesong__________________________________________________