Lynn Renee Infinitely

Our circumstances might change and new challenges pop up, but our resilience to struggle and our ability to smile at the end of the day is a triumph. Keep forging on fellow Leigh’s Survivors!

Hey, everyone! Just finished my 72 hour home EEG test! Such a relief to be free of it; since I’m allergic to the glue… But now I’m unplugged, shower friendly, and sleeping better!

Hey, everyone!
I attended Deaf Women United’s national conference, their 40th anniversary in July 2025, this year as a Deaf Business owner and was able to have my first market as an author, through Deaf Artisan Market Day! I had a very generous anonymous sponsor, who made this possible, and I want to share all my gratitude! I sold 17 books, which is great for my first market! We hope to get back out for another DAMD event this year when we can with Antheia Book 2 in tow as well! Here are some pictures of our amazing trip! Hope to see you and chat with my fans in the future! Thank you to all your support!

Hey everyone! When I say I have Leigh’s Disease, not many people know exactly what I’m talking about. So, I’d like to give you details on what it is:

Leigh’s Disease is a genetic mutation of the Mitochondrial DNA or rather mtDNA. Experts have determined that mutations in more than 75 different genes can cause Leigh’s Syndrome/Disease (we’ll come back to this in a second). There are 3 types: Early-Onset, Late-Onset, Leigh-like Syndrome. The most common is onset in newborns. Making my adult-onset even more rare than normal.

Early-Onset symptoms occur before age 2, progress faster, and is known as classical Leigh Syndrome. It affects both genders equally and is the most common form. Unfortunately, newborns and toddlers with Early-Onset Leigh’s Disease don’t usually live past a few years. About 1 in 40,000 babies are born with Early Onset.

Late-Onset symptoms begin after age 2 and may not occur until adolescence or early adulthood. It progresses slower, affects males more than females, and is extremely rare (less than 1% of Leigh’s Disease cases). This type is so rare that there’s no set prognosis timeline, and the symptoms are more difficult to predict. Roughly 1 in 400,000 babies born are diagnosed with Late-Onset Leigh’s Disease. Which equates to only 350 cases out of the 130-140 million births in a year! I am 1 of those 350.

Leigh-like Syndrome happens when an individual has symptoms of Leigh’s Disease, but with less involvement. While it will still have brainstem involvement and damage, it lacks some key characteristics of Leigh’s Disease. For example, while they have similar neurological and radiological characteristics like delayed onset of muscle weakness, there will be minimal to no eye movement problems and respiratory issues in people with Leigh-like Syndrome.

Back to that mitochondrial DNA mutation I stated earlier: The most common mtDNA mutation that causes Leigh’s Syndrome is the MT-ATP6 gene, my genetic mutation, and it is incapable of making ATP.
So, for those of you who remember grade school teachings, the mitochondria are the powerhouse of the cell, which means it creates ATP (the chemical compound of energy) from nutrients. People with a mitochondrial disease like Leigh’s Disease have dysfunctional energy production, and the efficiency of the process is lowered. Basically, the cells in my body can’t create enough energy for them to work/live properly.

With diminished cell energy output occurring, cells become damaged or dead over time. One part of the body heavily affected is the entire neuro system (brain, brainstem, nerves, spinal cord) because it requires high output of energy to function appropriately.
Another complication from the dysfunctional mitochondria is Lactic Acidosis, a buildup of excess lactic acid in the body tissues. Lactic Acid is produced when you exercise, but because your muscles are in a constant state of “exercise” with a mitochondrial disease, it’s created in excess. The excess lactic acid can cause damage to the kidneys, Hypertrophic Cardiomyopathy can develop (heart muscle thickening resulting in it being stiffer), breathing problems ie. pauses between breaths, rapid breathing, and/or shortness of breath.

Leigh’s Disease is typically diagnosed through lab testing (checking for Lactic Acidosis, enzymes that indicate Leigh’s Disease, and genetic testing) and radiological imaging (MRIs to detect brain damage or lesions).

Leigh’s Disease is fatal meaning it will cause death. Usually, the treatment plan is to slow its progression and make the child more comfortable. Slowing progression usually entails a high dose of vitamins, minerals, and nutrients.

As the person declines in gait, balance, muscle tone, or other issues, a wheelchair, cane, walker, leg braces, or other gear may become necessary for stable and safe transportation. Children who struggle to eat can benefit from a feeding tube. Those who can’t use the restroom anymore due to nerve damage will need a Colostomy, Ileostomy, or Urostomy to accommodate. When an individual is no longer capable of eating either because of swallowing or GI issues, they might need nutrition delivered through an IV for TPN (Total Parenteral Nutrition). These patients can have a PICC (Peripherally Inserted Central Catheter) line placed, which doesn’t have be changed as often as a typical IV does.

As you can see, this is a devastating disease. It affects so much of the body that it’s difficult to keep up with, regardless of whether you’re an infant, child, or adult. There’s currently a Research Clinical Trial (meaning they gather information on those afflicted, not administer treatments) taking place that gives me hope they won’t stop searching for a cure. Even without a cure, I’ve seen many young children outlive their prognosis expectations. They have smiles on their faces despite having severe limitations. That’s the power of community and love: the power to seemingly vanquish any limitations.

(Disclaimer notice: I am not a Doctor. I am a patient with said condition doing my best to inform others. If you think you or a loved one might have Leigh’s Disease, please consult your General Practitioner, Neurologist, and/or Geneticist.)

https://www.gofundme.com/f/support-lynn-renee-deaf-authors-journey

Donate to Support Lynn Renee, Deaf Author's Journey, organized by Lynn Renee Hey everyone! This is Lynn Renee, I'm a budding author, I have two books for s… Lynn Renee needs your support for Support Lynn Renee, Deaf Author's Journey

Hello everyone! I've had several fans wanting to know more about what my disease is, how it affects my daily life, and general updates which I'm prepared to share with all of you here and on my Instagram page, but I’m several years behind so I’ll need a little time to get it all out to you before I can do regular updates. I thank you for your patience.

https://www.amazon.com/dp/B0C9S84Z3F?ref_=cm_sw_r_apin_dp_04GCNSK5HY41HSKXHW4B&fbclid=IwAR1Lpuo8PQ3X2rlSQwwEhcdfT3hQ5e5j1EBv_c2NRVFZlbbaxuYS0-40y6w_aem_ARhgorOrIkHDldxgq5sQg0FrCSM8YGQ2F8It4HwmrQaYKDfFcVMWiYCF-TlGsmzipEY

Here With Me (Antheia) Music was his life. It was the reason his heart beat. In an instant his passion was stolen. When everything crashed, Sanosuke isolated himself from everyone, but when she showed up, he awoke. It was just a job, Josephine thought as she moved into the DiCaprio’s home. She had no idea what lie in w....

Hey everybody! Antheia 2 (Paperback) release date is July 11th! Get ready for another page turner!

Lynn and Anthony Provost, friend and brother! You’ll always be with me!

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Book # 1!