Shelley, bravo for being able to speak so well in front of many considering u were suffering from the inside so badly. I’ve never heard of this disease but will read up on it.. Thankyou for sharing your story and u will remain in my thoughts…. Best of everything that life can offer Shelley to both you and your husband.

Thank you Shirley. I am diagnosed with mitochondrial melas. After my mother passed away. Finally realised after long suffering she had it as well her sister and her mother all had it. Whole family passed now. It is hard. Stay strong

My wife is going through this, she lost her hearing, scans show her brain shrinking, her eye lids droop, I have to feed her at times , she’s is only 41 years old. Thank you for sharing your life story.

Thanks Shelley for sharing your story. So sorry to hear about this! Mitochondrial diseases are often underdiagnosed. And I strongly believe that advocacy and support groups are better positioned to build public awareness of the diseases to improve patient lives. Strength to you and your family. May God be with you!

I am a doctor from India suffering from Myositis and bedridden now because of flare up.After hearing shelley speak I cried that how much her family has gone through and still she is very hopeful.She is really an inspiration for me

Oh man...the amount of pain and trauma this family went through..

I didn't even think about how many issues can appear as a result of having mitochondrial disease. It is great that our world doesn't stay in the same place and develop very fast. More and more inventions appear that may really help people to recover from this or that disease, to conceive, etc. We just need to be aware of all the possibilities and opportunities and luckily this info can be found everywhere.

To those of you in the U.S. contact The Rare Disease Clinic in Atlanta,Ga where they are doing clinical trials.

If you can't participate in having a genetic influence yourself physically, you can certainly transfer your genetic traits by inculcating your values and ideals, your knowledge of your favorite things, your personality traits by demonstration since all these things are influenced by your own genetic inheritance. Babies even learn hand dominance by simply seeing their parents do things.

3:28 so sorry for your loss 😢😢😢😢😢

I can understand the biological desire to have your "own child." I was diagnosed with mitochondrial myopathy (merrf type) in 1992 at age 12 following genetic tests and muscle biopsy. As someone with this disease and understanding when diagnosed that I would pass it down so chose not to have children. I'm not financially well off otherwise I would love to adopt because there r so many children already without parents. I've never understood the necessity to have a child who physically resembles u and stubbornness isn't a genetic trait, it's a learned behavior that can be passed down to a non biological child. I would never put my husband and child in a position where I knew I wouldn't be around to help raise that child. Best of luck to u and I hope u find some alternative method of having a family whether it be adoption or surrogacy.

A friend is in his 70s and has just been diagnosed with mitochondrial disease i think he has had this all his life. Poor growth poor vision hearing and muscle strength but after a blood went sepsis because of a kidney stone his one eye started to droop after a muscle biopsy he was diagnosed. His mother died when all her system just failed and a cousin just died of als and fld.

Studies have shown that with certain genetic snps exposure to the mycotoxins produced by mold can induce mitochondrial dysfunction. Because each person is different so are the affects. Organic acids test from Great Plains and a functional practitioner are, at present, the only way out.

I hope she is doing well.I feel her pain.

I am sorry you lost your brother n mother, just know they are looking after you, i believe.

6:12 OMG I'm so so sorry 😢

My son have mitochondrial dysfunction he is 6 years but he have autism symptoms there is any medical treatment to help him i give him only vitamins to support cells

8:58 you are insanely strong i applause you for standing and talking

I'm recently diagnosed. Suffered with symptoms since 2008.

I remember doing a presentation in school of the third parent science, and how fortunate we as a society truly are after its discovery. I remember the teacher saying it was controversial, and I still cant wrap my head around WHY. We can let people have children without a ticking time clock disease, ones with their mothers smile or eyes, HOW are people making that controversial?

I suspect an outside exposure triggered the genetic disease to unnaturally progress to death for mother and son to rapidly decline at the same time and died within 16 months of each other.

Has someone tried pqq for mito disease ?

So how is she now?

I agree that you should be able to genetically select for a healthy baby, yet I don't believe that babies should be born with chores to do such as offering succor to a depressive woman with hefty health challenges. In the annuls of time there's never been an inalienable right to have children. Furthermore, bringing a child into the world who'll likely have to become its mother's caregiver, is unfair. Should this woman be able to carry a pregnancy to full term, though I doubt it, her medical condition would likely worsen dramatically through the stress of pregnancy, delivery and caring for her infant. Her reasons for wanting a child are understandable but selfish and lack insight. She herself doesn't believe she will live long but is prepared to abandon her child so long as this child shares her personality and mannerism so that her partner will always remember what she was like whenever he looks at the child they made together. It's a heartbreaking story for which I hope she's getting counselling. As she said, it's up to her and of course the lawmakers and ethics committee whether or not she should continue with the treatment and whether her health can tolerate the challenges.

Be careful with the mRNA vaccines?

Ia have mitochondrial dysfunction its very difficult i cant run and do sport its a hopeless .i hope there wil be a medicine .i pray to god for it .i would.pay anything for it