This remarkably brave woman, mother, and friend was first diagnosed with MS in January of 2015.
Everyday with MS is always different. There are no two days that are the same. For Heather, she can sleep for 10 hours and wake up and need to lay down after an hour. Her days consists of extreme pain in her limbs, numbness in legs, feet and hands, even moving to her face at times. Everyday she feels as if she looks through a constant fog, having trouble with short term memory, forming words, remembering words and what needs to be done next.
Hours can be lost in a day.
Shooting lighting like pains in her body are common. There is no rhyme or reason to what is going to happen next. The heat of Arizona greatly increases all symptoms, many times putting her in a paralytic state and unable to get out of bed.
The hardest part for Heather is when she looses time with her family. The moments that she is not able to be a part of because her body will not cooperate.
Her two kids, Dax & Brewster, knew that something was wrong when she was first hospitalized. While she was in the hospital, Heaher just told them that she was sick and getting medicine. They knew what her symptoms were. Heather waited until she was home to tell them she had Multiple Sclerosis and what that meant, as at the time they were only 5 and 10.
Their first reaction was fear, not understanding and thinking that she was going to die. It was heart wrenching. This went on for a while. Slowly, with constant reassurance they began to understand that was not going to happen. Heather talked about how this was going to change their lives in different ways. They called it their “new normal”. There are still hard days, it is very hard for them to see their mother in pain. They have become accustomed to helping her with her cognitive losses, filling in the words when she cannot remember the correct one, helping her when her tongue will not form words. And helping her when her short term memory fails. They are the reason that she wakes up and fights every day. They are the reason that HSCT is necessary for me. They need a mom that can be present in their lives.
There is hope in this battle. Very tangible and real hope in the form of HSCT Treatment.
HSCT Treatment: Hematopoietic stem cell transplant is the transplantation of stem cells. It is the only existing scientifically proven treatment, currently available that completely halts disease progression of multiple sclerosis.
This treatment does not come easily.
Heather will spend 28 days in Mexico. The treatment will consist of removal of her own stem cells, chemotherapy to kill her existing stem cells and the reintroduction of her stem cells.
Recovery after could be 6-12 months. During this time she will have an extremely compromised immune system. It is a roller coaster recovery with the risk of serious illness and infection.There is no guarantee that she will regain the loses that she has had at this time but it is a gurarantee that MS will no longer be able to control her life. Heather’s quality of life will be increased.
There is a true an urgency to get this treatment. Each day that goes by we risk more permanent damage. For Heather, family is her everything. They give her the strength to fight each day. They are also the reason that this extreme treatment is her only option.
Insurance will not pay. She has appealed it 3 times. There are feelings of fear, sadness and anger. The idea of this treatment has given her and her family hope for their future.
“I believe that the only way to handle a disease like MS, is to face each day with positivity. I believe in fighting. I believe in believing. I believe in seeing the positive each day. Most of all I do not believe in giving up.” — Heather
Thank you for taking the time to get to know more about Heather’s journey. The statement “I am everything…” has become her mantra within this fight.
"I am everything to me comes from the feelings of inadequacy that we all face during trials in our lives or just in everyday. It is a reminder that whether we are sick or sad or hurt. Maybe depressed. Maybe when we find ourselves feeling a little lost. It is a reminder that we are still everything. We are strong and beautiful. We are smart and successful. We can love and receive love. We are everything, everyday. And no matter what comes our way that can not be taken away. It is a positive reassurance that we are always enough." -- Heather