Get Janette Walkin’ Again; HELP reverse ALS!
My mother, Janette Ackman was diagnosed with ALS, also known as Lou Gehrig’s disease. ONLY five months ago and TODAY she can barely walk. This very aggressive desease which typically affects all muscles under voluntary control, and the person ultimately loses their strength and ability to eat, speak, grasp things, move, blink and breathe.
Janette loves to run. She ran 5ks and 10ks every weekend at the age of 60. Now she is barely able to walk. She also can’t do half the mundane tasks we do everyday, brushing her teeth, combing her hair, walking to the fridge to grab a bottle of water.
She is fighting tooth and nail to try to still do things on her own because she has always been a strong, independent person. Each day is more difficult as her body is being attacked by this horrific disease. She is a fall risk and has fallen many times in five months leading to numerous visits to the emergency room and staples in her head. Janette is on a feeding tube due to malnutrition which led to 33% loss of her Body mass index (BMI) so now, she relies on a feeding tube. Her “meals” consist of a special liquid protein shakes. She is unable to enjoy the satisfying flavors of a shared meal with friends and family at a restaurant, or dancing during a birthday, wedding or family celebration.
An array of organic supplements and CBD tinctures and oils to help with the pain. She needs a special chair to sleep in at night. We have nurses, physical therapists, massage therapists, speech therapists that come to the house. These are services we pay for out of pocket as her insurance does not cover these outpatient services.
We finally had a breakthrough just recently with a medication AMX0035 (sodium phenylbutyrate (PB) and tauroursodeoxycholic acid) which can help limit the cell death in ALS. All the trials show that this can help my mom up to 57% and start regaining some of her life and independence back. Unfortunately, the FDA has not approved this medication for ALS, which means no insurance company will cover it. This medication is a flicker of life for Janette. All which insurance does not cover and on average costing around $5000 for every 45 days.
My family is blessed to have Janette in our lives. She has always been generous and loving to strangers, friends and family Her faith in God has been a strong beacon in her life.. We love her and have faith that my mom will get better.
We understand there is still no cure for this devastating disease but miracles happen everyday. From the bottom of our hearts we are eternally grateful for any donations, especially during these hard times for everyone right now.
Thank you so much for your donation! It took a long time for my family and I to get here and share this with everyone, so anything and I mean ANYTHING helps.