MEDICAL HELP FOR SAMANTHA
Mitochondrial disease and Carnitine Deficiency which is a form of Muscular Dystrophy. This causes major fatigue, muscle pain/weakness, memory loss, heat/cold intolerance, hypoglycemia, etc. Mito affects all organs in the body.
POTS/Dysautonomia which is Postural Orthostatic Tachycardia Syndrome. This causes very low blood pressure, extremely high heart rate, tremors, brain fog, exercise intolerance, etc.
Ehlers-Danlos Syndrome. This is a connective tissue disorder that causes extreme joint pain, heart issues, etc.
Eosinophilic Esophagitis. This is a white blood cell disease that causes the body to think food is a parasite and attacks itself. Samantha had a G tube in her stomach for two yrs and lost ALL food. She has slowly been adding a few foods to her diet.
Fibromyalgia. This causes severe muscle pain and weakness and decreased energy as well.
Spine problems. This includes pars defects/fractures, scoliosis, kyphosis, arthritis, herniated and bulding discs.
She also suffers from way too many other things to list. As you can see, she has been through so much all of her life.
Samantha is simply amazing. Through all of her struggles, she doesn't complain and always manages to stay upbeat and positive. She is always willing to share her story in hopes of helping others by bringing awareness. She is actively involved with the MDA (Muscular Dystrophy Association) and is a local ambassador.
She strives one day to be a motivational speaker and to let others know, who suffer from severe health problems, that life is still worth living and always hang on to hope. She hopes to someday change the world. I believe she's already accomplished that...
As one of the doctors watched her cry her eyes out in so much pain, he decided to prescribe strong pain patches for her back. I got the dreaded call that her insurance has denied this medicine. I will do anything to make sure her pain is lessened and will be trying to pay for these out of pocket. I need to. I cant watch her in pain any longer.
These are the things we are constantly up against with medical bills, etc. Its never ending. I wish I could wave a magic wand and take it all from her. In the mean time, we will simply keep plugging along and I will do the best that I can for her.
Again, thank you so much for all who have given to help out. For those who simply cannot - we would appreciate prayers for strength and healing.
I will update when we return. Fingers crossed they come up with a plan to help her pain. Enough is enough already.
Thank you to all who have been there and helped us on our journey! Please, if you can, share her link. It truly does help with expenses!
We finally found a great mito doctor in Jacksonville and he has been wonderful to Samantha! Taking the drive six hours north is costly. He has also changed and increased meds for her mito cocktail which insurance does not pay for.
We travel two hours north for her spine doctors. Samantha is suffering from severe spine issues which include two fractures in her back, disc herniations and bulges and degenerative disc disease - just to name a few. She is currently wearing a special back brace in hopes that this would help. So far it has not and she continues to suffer immense pain.
Im trying to work on a local fundraiser soon to help offset some of these costs.
Its with a very heavy heart that I even have to do this. We've always done fundraisers to help organizations such as the Cured Foundation and the MDA (Muscular Dystrophy Association). Both organizations help Samantha's diseases and have been wonderful. We love helping other people, but when it comes to helping ourselves, it proves very difficult.
Perhaps it is my pride. I don't know. I hate having to do a personal fundraiser to help with something I should be able to do as a mom.
Many of you know that Samantha suffers from Eosinophilic Esophagitis and Mitochondrial Disease. Some may not know what those diseases are. I have included two links at the end of videos we have made to help inform.
In addition to the EoE and Mito, Samantha has been diagnosed with spondylolysis and spondylolythesis (fractures in her spine and slippage), Scheuermann's Disease (which is an upper curve of the spine), Carnitine deficiency, Ehlers Danlos Syndrome (which is a connective tissue hypermobility disorder) and a host of other issues.
This has taken a huge toll emotionally and physically on her, yet through it all she remains strong and postive and smiles her beautiful smile.
If you cant help, we truly understand. Perhaps you can simply share her link or say a prayer. All are truly appreciated.
Here is her Mito video:
Here is her EoE video: