Patients Views About Mitochondrial Disease
Family & Friends View About Mitochondrial Disease
Meet Autumn & Her Mom, Dawn Kenney"When Autumn was born she was already born a Miracle. I was never supposed to have any viable pregnancies so my husband & I decided to adopt. We were blessed with 3 beautiful children. Five days after the adoption we found out I was pregnant but at that time never expected the pregnancy to make it to full term or even the 2nd trimester. I was on bed rest the entire pregnancy since I'm so high risk. Autumn was born on June 11, 2008. She was so beautiful & perfect. Our lives went on as any normal busy family of 4 would. When Autumn was about 9-10 months old I started noticing things like she wasn't as stable as I felt she should be, she was choking a lot with her food & milk, she seemed a little weaker then what a child her age should be but every time I took her to the doctors her doctor at the time just kept telling me it was first time mother jitters but I knew different. I changed doctors by the time she was 14 months old & that is what started all the tests, drs appointment, hospitalizations, medications & eventually her diagnosis & our journey."
"When Autumn was 18 months old we were put into the hospital for her having a low co2 level. She was misdiagnosed a couple of times until she had a brain MRI done this is what showed she possibly had Leigh's Disease. By April of 2009 Autumn's diagnosis was confirmed with the Leigh's disease by a follow up MRI & difficulty breathing. By July of 2009 Autumn got her confirmation of the Complex 4 Deficiency Surf 1. This disease affects her brain stem & spine. It has taken away her capability to eat, breath, see, stand, crawl, move, smile, talk, grab, mobilize, & so much more. Her temps are not regular, she has seizures, she cant control her movements, she has neuropathy, she cant urinate without being cathed, she is assisted in everything. Autumn was trached at 2 1/2 years old when she coded & was not able to breath on her own as we were getting ready to walk out of the hospital from being discharged for a g-tube placement. She is now vent dependent & oxygen dependent. She has around the clock feeding & water, she is cathed every 4-6 hours, suctioned all the time, she requires a vest treatment & a cough assist machine to help keep her lungs clear & her clear of pneumonia. My life is busy with drs appointments, medications, regulation of her vents, transportation around the house & outside of it. We have people in our home all the time including, nurses, drs, counselors, breavement specialists, CNA's, social workers (for hospice), therapists, pastors, supervisors, RN's, teachers & so many more. My life is always on the go. My other children love on Autumn all the time & read, play, talk, kiss, hug, draw, massage her feet & legs, help with carrying her equipment up & down the stairs as we transport her, changing over her oxygen, & just being the best brothers & sister anyone could ask for." "Our life can be crazy, hectic, & stressful, but it can also be the most rewarding, appreciative, loving, caring, & the BEST life we could have ever asked for. My children & my husband & I have learned so much through Autumn. She has taught us so much more then I thought I could ever learn including how to find my strength when I feel it is all lost, how to find my love when I get so angry at the disease, how to appreciate when I feel I dont have enough, & how to love more then I ever thought possible. My life is mine & with Autumn in it My life is PERFECT!! " - Dawn Kenney Meet Dan Drouin"About six months ago, I was on Facebook and I started seeing pages on sick kids. One at a time, I started joining them. At the time, I knew nothing about Mitochondrial Disease, just like everyone else. I had joined a few random pages at first. Then somehow, God led me to Kylee, from Hope for Kylee. Other than some independent study, Kylee and her mom taught me most of what I know about mito. Over the months, I have joined many mito pages of kids, teens and adults. I have no family with Mito, but I believe God put on my heart to care for and do something for the mito people that I love. I later joined Mito Wishes Upon a Star, a group that sponsors mito children for Christmas. I was given a wonderful family to love on. Lastly, I was asked to be the director of the organization which I accepted. Mito people are everything to me now and I won't stop till there is no more mito."
- Dan Drouin |
Meet Brionna & Her Mom, Karen Lee Myers"In December we got back the results from Bri's muscle biopsy. It came back as Mitochondrial Disease. We didn't know anything about this disease or hadn't even heard of it. As we started to educate ourselves about it we found out its a lif threatening disease with no cure. Our hearts are broken and we feel completely devestated over the news. Nothing can prepare a mother or father to hear this. Martin and I started reading stories of other families that have children with the same disease. And almost every one of them had the same point. And the point being to raise awareness so funding could be put in place to help find a cure. This is not an uncommon disease it's just an unknown disease. Every 30 minutes a child is born that will be diagnosed with Mitochondrial disease by age 10. There are more children that die from this disease than all chilhood cancers combined. The fact is that many of these families have went years trying to find out what was wrong with their children before being diagnosed. I know we sure did! Many have lost there child to Mitochondrial Disease without even getting a diagnosis. Adults can get this disease as well, but it is more common for children to have it."
"As parents all we want to do is protect, love and take care of our children. But this is one thing I can't protect Bri from! I can't take this from her! As I laid in bed and cried I thought to myself what can I do for Bri and all the kids that have this? The realization of there being no cure or treatment was a nightmare! A nightmare that you can't wake up from! After a lot of prayers and soul searching I told myself that I had to pull the covers off my head. I have a little girl that needs my love and care! And those things I can do for her! I can also do my part in spreading awareness and help raise money for a cure!" "Most people go through out life taking it for granted! Believing that this wont or can't happen to us. Especially to your child!! Martin and I never thought this could happen to our little girl! But it did and she needs our help!!!! PLEASE will you help us spread awareness so that one day they can find a cure!! Visit WWW.UMDF.ORG to find out more information on this disease!! Thank You!" - Karen Lee Myers |