Saturday, November 7, 2015

So How is Maya?

First, I want to apologize.
It has been way too long since I last provided an update. I know that you wonder how Maya is doing. I had hoped for some good news this Summer, but it fell through, and I was a bit stuck. Perhaps, even worse, I was really sad that we weren't hitting the home runs.
Enough about me... How is Maya?
Our greatest focus over the last couple of months has been to preserve Maya's ability to walk. In addition to the usual physical and occupational therapy appointments, Maya worked with a movement specialist for one month, five days a week, two hours a day. It was intense. There were lots of tears, successes, epiphanies and so much more. Have we saved Maya's ability to walk? Unfortunately, no.
Is it the disease? Is it confidence (understandably, Maya is terrified of falling)? The answer is probably "yes" to both. One of the truths about Ataxia (and other disorders of the brain) is that the underlying disorder causes the individual to lose their ability to maintain their balance. The person would rather sit, than fight the mixed signals that their brain produces. The problem is that sitting makes it worse. You have to push yourself mentally and physically to exercise regularly or things get worse.
The painful truth is that Maya cannot take more than three steps without falling. If you see her at school, you will see her walking with Tabby, Suzette or myself. At home, Maya uses a walker to get around the house. The walker gives her some sense of independence. For understandable reasons, she refuses to use the walker at school.
Academically, school is hard for Maya. She is a couple of grades behind her peers, but we feel like she is improving. We are lucky, because at SDCCS, Maya is surrounded by a loving team that provides her with support that is beyond words. Her team at school pushes, encourages and loves Maya as if she were their own child. For this we are eternally grateful.
Medically speaking, Maya continues to take a mixture of drugs and vitamins that have been shown in the lab to slow the progress. It is not a cure and in some areas we feel that it is beneficial. In other areas, we know that it is not good enough.
My greatest fear is that it will be too late when we find a cure (or a better treatment). I know that untreated, swallowing may become a problem, that she may require a g-tube, and that some form of dementia will take over her mind. Worse, I know that untreated, I will probably outlive Maya. This is the part that really sucks.
So what are we doing?
Everyday we keep Maya exercising and engaged in some form of activity. "Move it or lose it".
We are trying to keep her out of a wheelchair. We believe (and the science supports) the fact that the lack of activity will accelerate her decline. This is not an easy choice. Maya pays the price in mobility and some might say safety. This choice is a struggle, but we know that we are making the right decision.
We are closely monitoring a clinical trial for enzyme replacement therapy. Maya was rejected from the trial, but we believe that she may be able to access the drug in 12-24 months. The administration of the therapy brings plenty of risk and it is not a cure, but it may be a good shot.
We continue to work with researchers to find a cure to help Maya. Last year, so many of you donated to the Fifth Season benefit. Part of the money raised was used to fund a part time post doc researcher for six months. This post doc works in the lab that discovered the regiment that Maya is currently taking. In a couple of weeks we expect to announce a new fundraiser to raise funds for a full time post doc and a couple of other projects that will directly benefit Maya and others like her. STAY TUNED!!!
Most important, we just give Maya all of the love and support that we can. We are always thankful to those of you who visit with Maya, ask her how she is doing and just take the time to say "hello". You may not always get a timely reply or her response may be socially awkward, but please know that these are the simple easy gestures, that mean so much to Maya.
As always, thank you for your support.
Beau and Suzette

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