***Update February 2015** I have continued to follow Autumn’s story for over a year now. She has had her ups and downs and a really scary close call just a few weeks ago. Beautiful Autumn continues to fight like a warrior and prove that she is a true miracle. Please read her story and support her family by following her on Facebook. Send them love and prayers as you read her story – spreading awareness of Mitochondrial and pediatric heart disease!***
Autumn’s mother has been kind enough to share her daughter’s story through Facebook and now also via Mama in the Now. Autumn Kenney has a Mitochondrial Disease, Leigh’s Disease and a Complex IV Deficiency.
Autumn was diagnosed at 18 months old with Leigh’s Disease. At 2 she was given her terminal official diagnosis of Complex 4 Deficiency Surf 1. Since then we have been told on more times than I can count that she will not pull through and to say our goodbyes. She has fought and fought and is still here. She has gone through more surgeries, physical therapy, feeding therapy, occupational therapy, and speech therapy in the hopes of just prolong the effects of what this disease steals from her.
I have NEVER known or seen someone endure as much as our little Punky, and through it all she ALWAYS smiled. Even today that she doesn’t have much movement she still tries to get that smile going. We have been fighting so much along side of her and for her, our family has been put through the ringer but I wouldn’t change it for anything!
She is our little miracle. After 6 miscarriages my husband and I were told we would never have children unless we paid for IVF with PGD (In-Vitro with Pre-Genetic Diagnosis). This expensive procedure would cost us $25,000 so we decided instead we would foster and adopt from the county. We were blessed with 3 beautiful siblings with special needs and adopted them 7 months later.
Then we were blessed with finding out 5 days later that I was once again pregnant with my 7th pregnancy. I was scared and hurt that I would have to go through another miscarriage, but this pregnancy was different. The pregnancy stuck and 42 weeks later we were blessed with a beautiful baby girl names Autumn Ruth. Everything was normal and happy with our family. When Autumn was eight months old I found out I was again pregnant this time it would be a baby boy Logan Riley.
We started noticing different things going on with Autumn at about a year old. She was losing her balance, she was weak in the legs, she didn’t walk, she was vomiting a lot, she often seemed tired, but for the most part was still pretty normal. After many tests and seeing different doctors we were given the horrible news two weeks after our son was born that Autumn had a incurable & untreatable terminal disease.
We were in shock & weren’t even sure if we believed it. We pulled together as a family and grew stronger for the sake of her and our other children. We have been through so much! I HATE this disease! However, Autumn has had a beautiful purpose while here. She has touched so many people and changed so many lives, including ours. She has been through more hospital visits & more procedures then I can count.
She has stayed strong through it all! Her spirit is BEAUTIFUL and we are so blessed that we were chosen by God to be Autumn’s earth family. Please like and share her Facebook page and help us get her story out to help bring awareness. This Angel of ours is so precious if you read her story and follow her she will touch you just like she has many others. You can find her page at Autumn’s Mito Fighting Angels
Read our other “Heart Stories” shared by fellow heart moms telling their stories of heart break and bravery.
Share our “Caring for the Caregiver” series with other strong parents with special needs children.