Helping Hazel
Donation protected
Hazel was diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO) last November. This is a very serious and very rare auto-inflammatory disease of the bones. It causes bone lesions and severe pain. She has not had one day pain free since February of 2017. It took 9 months of seeing every doctor once can imagine and every natural and holistic approach too, before someone could name it and describe what was happening. We were able to start managing her pain better once we understood what was causing the pain. Little parts of her personality that had been swallowed by the pain started to return.
We started the entire family on the Auto Immune Protocol Diet in January of 2018. We did not see immediate reduction in her pain, but after a few months, we did realize that she was not having flares like she had before. There was still significant pain, but no more of the pain so bad that she could not recognize me or her father, or lose the ability to form or understand words. She was able to get out of her wheelchair and walk again. Those were hard days indeed. She no longer said that it might be better to be dead than to have really horrible pain. (That will break a mother's heart to hear her then six year old say those words.)
Time passed and she kept getting better and better. We wanted to get some more imaging after the new lifestyle changes we had made. An MRI showed no new damage and a steady path towards healing. That was late April. By May, she was able to run and swim with only slight discomfort. She was able to do things we had not seen her do in over a year. Summer came, we went to the beach and spent time at a lake. We thought that things were looking up and we had this disease under control. We were wrong.
The first year of her pain, the months of May through August were better than the others before and after. It didn't occur to us that this might be what was going on here. Talking with other families with this disease, this is a common pattern. Everyone looks forward to the warmer weather because the pain is so much less then.
September came with levels of pain we hadn't seen in quite some time. We had been hoping that we could wait until January of 2019 to have to do another full body MRI to see if the disease was spreading or healing. Her pain has gotten too bad to wait that long for imaging. That is a necessary next step in this process of treatment. We travel to Duke, 3.5 hours away, to see an expert on this disease. It is so rare, most doctors know nothing about it. We will be getting that done next week.
We have been going down a significant financial hole since this began. The cost of treatments has meant that we are not able to afford everything that is being recommended for her treatment. The rest of the family is not getting any health related issues addressed, due to lack of finances. I am not able to work outside of the home because she is in too much pain to go to school or be anywhere else. When she is in pain any vibration hurts, speaking above a whisper can make her scream in pain. Car rides are nearly impossible. It is a full time job to care for her in this state.
We have been slowly going under water financially since this whole chronic illness began. We are working on other income, and that seems to be slowly coming, but the hole is so deep and the interest is all we can pay on our debts and all we have been able to pay for some time now. It feels like we will never get ahead. We have a no frills life, so there is not much else to cut from our budget.
In the long run, we think that we can get out ahead of this and with some extra income that we might stop sinking, we hope. Any money that you provide will be used to help us climb out of the debt we are already in as well as pay for all necessary medical procedures and medicines. The entire family needs mental health support to help deal with the impacts of this disease, but it has been neglected to keep a roof over our heads and food on the table. We really hope to be able to take care of Hazel and if there is anything left over, to care for the rest of us.
We started the entire family on the Auto Immune Protocol Diet in January of 2018. We did not see immediate reduction in her pain, but after a few months, we did realize that she was not having flares like she had before. There was still significant pain, but no more of the pain so bad that she could not recognize me or her father, or lose the ability to form or understand words. She was able to get out of her wheelchair and walk again. Those were hard days indeed. She no longer said that it might be better to be dead than to have really horrible pain. (That will break a mother's heart to hear her then six year old say those words.)
Time passed and she kept getting better and better. We wanted to get some more imaging after the new lifestyle changes we had made. An MRI showed no new damage and a steady path towards healing. That was late April. By May, she was able to run and swim with only slight discomfort. She was able to do things we had not seen her do in over a year. Summer came, we went to the beach and spent time at a lake. We thought that things were looking up and we had this disease under control. We were wrong.
The first year of her pain, the months of May through August were better than the others before and after. It didn't occur to us that this might be what was going on here. Talking with other families with this disease, this is a common pattern. Everyone looks forward to the warmer weather because the pain is so much less then.
September came with levels of pain we hadn't seen in quite some time. We had been hoping that we could wait until January of 2019 to have to do another full body MRI to see if the disease was spreading or healing. Her pain has gotten too bad to wait that long for imaging. That is a necessary next step in this process of treatment. We travel to Duke, 3.5 hours away, to see an expert on this disease. It is so rare, most doctors know nothing about it. We will be getting that done next week.
We have been going down a significant financial hole since this began. The cost of treatments has meant that we are not able to afford everything that is being recommended for her treatment. The rest of the family is not getting any health related issues addressed, due to lack of finances. I am not able to work outside of the home because she is in too much pain to go to school or be anywhere else. When she is in pain any vibration hurts, speaking above a whisper can make her scream in pain. Car rides are nearly impossible. It is a full time job to care for her in this state.
We have been slowly going under water financially since this whole chronic illness began. We are working on other income, and that seems to be slowly coming, but the hole is so deep and the interest is all we can pay on our debts and all we have been able to pay for some time now. It feels like we will never get ahead. We have a no frills life, so there is not much else to cut from our budget.
In the long run, we think that we can get out ahead of this and with some extra income that we might stop sinking, we hope. Any money that you provide will be used to help us climb out of the debt we are already in as well as pay for all necessary medical procedures and medicines. The entire family needs mental health support to help deal with the impacts of this disease, but it has been neglected to keep a roof over our heads and food on the table. We really hope to be able to take care of Hazel and if there is anything left over, to care for the rest of us.
Organizer
Roberta Mattson
Organizer
Asheville, NC