Starting AGAIN 🧠

The following is a post from my mom's Facebook page. The response from people has been really overwhelming and humbling. Today it is with gratitude that I am beginning a treatment program, and I will be starting to post updates on how I am doing on my blog. I have a positive outlook on this treatment and am ready to take back my life so that I can feel good again. This treatment offers something very new and promising for individuals with chronic pain.

January 17, 2020

Dear friends and family,
So many people have asked us for updates on Malia and for a long time we haven’t had much to say. In all honestly, November and December were rough months for her. I did not get too many Christmas cards out, and I was going to try to do that today, but this feels easier. Thank you for your cards and well wishes and know that they are returned in our hearts. I will try to make this long, complicated story short. We moved Malia’s treatment to Cedars Sinai in December. We've seen the head of neurology twice. She thinks that she is going to diagnose Malia.

It isn't great news and it's not with something we've never heard of. The diagnosis is more of a determination of what she does not have, but it still opens treatment options and with an actual diagnosis she may be eligible for clinical trials. I'm sure you are asking what is it that she has? Well, it's called MOG which stands for Myelin-oligodendrocyte glycoprotein. It means that she has an antibody to myelin. There is a lot of money going into research and hopefully new drugs will be coming. In the meantime, our doctor in Thousand Oaks who has treated Malia for Lyme, did a test last month (when she was so bad) to see if there was some DNA of anything in the blood (such as viruses, fungi, bacteria, etc.) and that test came back clean. When I talked to him about this new diagnosis, he agreed it could be that, and had some new treatment options for her to explore. All of which are expensive and are not covered by insurance. Malia has asked us to stop throwing our money away on her, but she’s our sweet girl and we can’t until we find something that will help her feel better, function better or cure her.

Please know that we have done everything that we can. We have seen every type of doctor and alternative doctor, tried every crazy and not so crazy treatment. (God bless her- she’s willing to try them.) Malia cannot be tested for almost anything because she takes prednisone and she does not make her own Ig (which is what doctors test for). In fact, she did not test positive for MOG – but it is the only plausible diagnosis that the doctors can find. She gets an IV treatment once a month called IVIg which is 1,000 people’s immunity. (Thank you to people who donate blood.)

The money that our friends and family gave five years ago went towards us taking Malia to the Mayo Clinic. Although we did not get “answers” while we were there, that is where this diagnosis originated. Her doctor at Cedars has asked us to join the Guthrie Jackson Foundation, which is for a different but similar condition. We hope to make connections and that Malia will benefit from the research they are funding.

I feel we are in a good place. We are not moving forward by leaps and bounds, but it feels like progress. She is hoping to try some new prescription medication to help her feel better in the short term as well. Doctors move slow. The daily struggle is a lot sometimes and it's getting harder for her to put on a brave face. God bless her she does. No one could be stronger and withstand what she has been through with less complaint. This has gone on since December of 2013, with Malia spending every holiday of 2014 (except Christmas) in the hospital. Thank God that’s been the last hospitalization, not that there have not been close calls.

I know that we could not keep putting one foot in front of another each day without your constant prayers for her. When I get down and wonder where God is in all of this, I imagine what if He wasn’t here in all of this. Thank you – we couldn’t do it without your faith, love and support.

Finally, Tom’s friend is a member of Kiwanians – a service organization with a mind for children – they have started a GoFundMe campaign for her. The money will go towards her treatment. We did not ask for their help, but we cannot afford to turn it down. We are grateful that there are individuals with the heart and means to help children like Malia. We have already asked our friends and family and have been so blessed by you that we would not ask you again. However, if you are interested here is the link www.gofundme.com/f/support-malia-hassenbein-in-her-fight-fo…

I appreciate your interest and support. God bless you.