by toogie 01 Jun 2018

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.

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by arisann 12 Jun 2018

Prayers and love to you!

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by toogie 11 Jun 2018

Thank you all for your condolences, your prayers for our family,continued prayer for Sam and Sydni. I wanted to give you the face of Jarred. He always had this smile and a hand out to shake for when he met you or a hug for the ladies. He is missed...
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

2 comments
toogie by toogie 11 Jun 2018

I also wanted to add, I have read each and every heart felt comment and sincerely appreciate each one and have spread flowers for all. Our gardens are growing!

arisann by arisann 12 Jun 2018

So sorry to hear about your loss. May The Lord draw close to each of you and give you His peace, love and comfort. Holding you all in HIS hands as each day passes. He looked like a fine young man. Love is forever! Prayers for you all.

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by kustomkuddle 02 Jun 2018

Sending hugs to you and your family. Words cannot express how sorry I am for your loss.

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by sebsews 02 Jun 2018

Sending condolences to you and your family. I pray for a cure for this disease. Hugs, Suzanna

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by sewdeb 02 Jun 2018

I'm so very sorry for your loss, Toogie. You and your family are in my thoughts and prayers. Hugs*, Deb

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by sewdoctor 02 Jun 2018

I am so sorry....what a tragedy.

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by sdrise 02 Jun 2018

My sympathies to you and the family!

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by zoefzoef 02 Jun 2018

Much strenght to everybody involved. I also hope that they can find a. Cure or something to help them.

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by mariahail 02 Jun 2018

sorry for your lost...hugs and prayers***********

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by momac 02 Jun 2018

My condolences and prayers go out to you and your family. Hugs from Maureen

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by mariagiannina 02 Jun 2018

My condolences Toogie, will be praying for you and your other family members.

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by pennifold 02 Jun 2018

Oh! dear Toogie, my heart is aching for you and your family's loss. I pray that there will be, in time, a cure for this disease. Prayers for all concerned. Love Chris

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by sewtired 02 Jun 2018

My condolences to you and your family. I pray that the researchers may find a way to fix this faulty gene in time for the others in your family and others similarly suffering.

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by katydid 02 Jun 2018

So sorry as your family has gone through so many issues. I know you are devastated Do you feel like Job in the Bible?

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by cfidl 01 Jun 2018

My condolences toogie. My thoughts and prayers are with you and yours.

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by jrob Moderator 01 Jun 2018

May comfort find you and your family and wrap you all with love. Praying for peace for the two cousins with this awful disease. There is a cure, just when it will be discovered is the hard part, especially for those 2.

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by lbrow 01 Jun 2018

So sorry Toogie. Wish more could be done for these inherited diseases that are so bad.

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by shirley124 01 Jun 2018

Such sad news. My thoughts and prayers are with you all at this sad time. Big hugs

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by dailylaundry 01 Jun 2018

What sad news for your family. I am so sorry. I so hope a cure will be found to help Sydni and Sam. Prayers for your dear family! Hugs and love, Laura.

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by gdsteliga 01 Jun 2018

I am so sorry for your loss I pray every day for cures for these terrible incurable diseases. In God's time. My prayers are going up for you and your family. Hugs from me to all of you.

God comfort and bless you.

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by graceandham 01 Jun 2018

Oh, Toogie, I am so sorry for their loss, and yours. This is heartbreaking. He didn't seem to get his "fair" share of years and had some bad ones along the way. May his parents find acceptance and peace in the days ahead. I will pray for all, but especially for Sydni and Sam, as this is another time to look inward and think about what may be ahead.

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by stork 01 Jun 2018

Such sad news. So sorry for the loss to your family. God Bless and sending prayers!!

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by dragonflyer 01 Jun 2018

So sad for your loss....my condolences to your entire family...

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by mops Moderator 01 Jun 2018

May you and your family find peace and comfort. It must be so hard to have such an incurable disease in the family!

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by crafter2243 Moderator 01 Jun 2018

I am so sorry for the loss. This sounds like a horrible disease. Prayers are with your family.

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by rescuer Moderator 01 Jun 2018

May you and your family be blessed with peace and comfort.

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by gerryvb 01 Jun 2018

prayers and condolences for you and family. I had never heard of this disease, must be so hard to have such a fatale disease without a cure. And so sad, so young to die. My thoughts are with you and the family.

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by maleah 01 Jun 2018

Dear Toogie, May the good Lord keep you in His tender mercies at this time of need. Prayers for you and your family...….

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