Hello Cuties- Sadly, we lost a nephew late yesterday to a disease called Friedreich's Ataxia.
Friedreich's ataxia is an autosomal (chromosone) recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function.
Generally, within 10 to 20 years after the appearance of the first symptoms, the person is confined to a wheelchair, and in later stages of the disease individuals may become completely incapacitated. Friedreich's ataxia can shorten life expectancy, and heart disease is the most common cause of death.
He was 34 years old. His heart just couldn't function anymore. Jared is my dh's brother's son.
We have 2 more in the family with this disease. Sydni is my grand daughter's Lanie's age. They both graduated high school this year. Sydni's brother Samuel is 23 my grandson's Dalton and Dustin's age. Sam is in college. Both of these are my dh's nephews children and both are in wheelchairs. Their parents fly them all over, for test and participate in experimental studies, as this is no cure and fatal disease.
I have video of Sam playing baseball with my grandsons when he could still walk and try to run. My grandsons were so sweet, to help Sam try to fit in. They were young maybe 10 and knew something was wrong with Sam because he kept stumbling and falling.
When Sydni was maybe 7 we noticed it through her walk but parents were in denial. It is hard to accept a diagnosis like this for your children....I can't imagine how Sydni and Sam feel, or their parents, upon hearing about Jared.
God comfort and bless you.
While talking to Sam's mom at the wake, she said Sam had asked how old Jarred was. Sam is 23 and Jarred was 34...we both knew he was counting, thinking he may just have 11 more years....None of us know how long a person has, but for him, he is constantly aware....Sydni doesn't seem to be as conscious or think about it yet, like Sam.
Again, thank you for your friendships and support through it all. -Toogie