MTM news (Jan. 14)
For the past couple weeks we’ve been wanting to share the most recent news from the MTM community, but we warn that it’s sad news.
Joshua Frase, a 15 year old with Myotubular Myopathy, passed away on December 24. Joshua was one of the best known kids with MTM because his parents were very involved in raising money and awareness about the disease. They started the Joshua Frase Foundation in 1996 and have raised millions of dollars for research that they hoped would lead to a cure for MTM within Joshua’s lifetime.
You can read some articles about Joshua and the Frase family here and here. We haven’t ever met them, but Joshua sounds like an amazing kid. He was a great student and was extremely motivated. He got straight A’s despite not being able to sit up in school for the past few years.
We’ve been sad for the Frase family, thinking about them often through the holidays. But maybe more significantly to us, Joshua’s passing is also a hard reminder about our lives. Another remarkable thing about Joshua is that he lived as long as he did. At this point, fifteen years is a long time for a person with MTM.
We don’t often talk about this fact – Lucas’s short life expectancy – because ultimately we want to hold out hope, and because we don’t have any concrete statistics about kids living with MTM. One of the articles, for example, says that according to medical literature, 90 % of kids with MTM die before their first birthday, but then it goes on to refute that claim. The truth is that we haven’t heard about any people with x-linked Myotubular Myopathy – the most severe form of the disease that affected Joshua and now Lucas – living into adulthood, though this is most likely because only in the past decade or so has the technology been available to help kids with MTM survive through their early years. We have been in contact with other MTM families who have boys aged 9 or 10 who appear to be thriving within the limitations imposed by the disease. We want to hold onto the possibility that within Lucas’s lifetime there might be major medical advances, and that Lucas is unique and strong and will defy the odds.
At the same time, knowing that the life expectancy for kids with this disease is short reminds us that the time we have with Lucas could be much shorter than most parents count on having with their children. There are no words to describe how painful that is. To love a baby so deeply – to keep falling in love with him more and more and more – and at the same time know that the odds say that he won’t live more than 10 or 15 years. It’s horrible.
There are moments that it feels OK to be so acutely aware of mortality. Ultimately none of us have a guarantee that we’ll wake up tomorrow, or live 10 or 15 more years. So we let Joshua’s death remind us to treasure and take advantage of the time we have together, however long it may be. And we really mean this, not just as a cliché, but in practice. On the days that we start to feel lost – worrying about what it means to be a stay-at-home mom, or when we’ll ever move to the Northwest, or how we’ll get health insurance, or if we’re doing our best to build social justice movements – it’s powerful to remember to stay present with each other and the people around us rather than getting totally sucked into concerns about the future. Of course we can’t help but worry about what’s to come, too. But ultimately Lucas helps us keep things in perspective. Having dinner together tonight is important. Lucas getting immense pleasure from chewing on frozen peaches and singing the nanana song is important. Learning the word “nose” is an accomplishment deserving major celebration.
Most of the time this awareness of mortality is deep in the background of our lives, and we just treat Lucas like Lucas, the fabulous kid that he is. With the passing of Joshua Frase it’s on our minds, so for now we felt the need to share these thoughts while also acknowledging the extraordinary life of Joshua and many other kids with MTM that have come before Lucas.
Comments (9)
ilana jean
January 21st, 2011 at 11:11 pm
love you guys.
Nancy
January 21st, 2011 at 2:55 am
Krista (and Burke) — thank you for taking the time to put your thoughts down so eloquently for the rest of us to take in. For many of us, it’s only when someone passes that we stop to think about death (and too often, fear it). Your post is a gift telling me to slow down and savor what I have now before me.
Margo Young
January 19th, 2011 at 12:34 am
As a parent of a child, lost, I feel I have an understanding of this weight of weights you have on your lives. My situation was and is completely different from yours, as my little boy died in my arms before he had a chance to really live. My imagination of his future will always be stuck in the “what-if”. Your words though are so true for me. Parents who go through loss or loss of “normal” life are different and I applaud and appreciate your eloquent and exact words that it is just horrible. “To love a baby so deeply-to keep falling in love with him more and more and more…” I only know from experience that whatever love you give and however long or short that life is, that is really the only thing that matters. The “what-if” doesn’t get you very far, but the “what was” will keep you sheltered through whatever you face. You are brave and strong for loving as strongly as you do.
Julie Graves, Albany CA
January 17th, 2011 at 8:48 pm
Joshua Frase’s story and his parents work on behalf of MTM kids is inspiring, as well as sobering when we realize the urgency of the need for progress. Reading your posts I often long for something to do in support of your beautiful family besides wishing you well. I am grateful for the link to the Foundation website! Wishing you, and Lucas, and the MTM researchers at Wake Forest and Boston Children’s a good year ahead.
Liz
January 15th, 2011 at 4:49 pm
It takes a tremendous amount of courage to face these difficult possibilities and to share your feelings about them. Thank you both so much. And it takes expansive souls to grapple with, hold and be present with these things. You both amaze us with your insights and ability to communicate them so poignantly. It’s so true that awareness of mortality can truly open up new levels of experiencing and appreciating life. Jon showed me that. I don’t think I ever knew anyone to enjoy life as deeply and richly as he did, all while facing the ultimate. And yes, miracles and blessings can come at any turn. So the way you’re treasuring beautiful Lucas each day, and celebrating each gift, each new feat–this is what we ALL should be doing. As you say, there are no guarantees for any of us. The only sure thing is love. And that’s here forever…
xoxo
Anne
January 14th, 2011 at 5:42 pm
Sending so much love to you three! We are never sure of the future, and its good to be reminded to cherish the moment. Thinking of you
Madeline
January 14th, 2011 at 4:49 pm
Krista and Burke – thank you for sharing the bright moments as well as the darkness that is part of your lives with Lucas. I love your bravery and honesty, and I think about you guys all the time.
Amy Andrews
January 14th, 2011 at 4:26 pm
Thank you so much for posting and for being so open and honest about your feelings. thank you for sharing your lives with us. I was so sad to read about Joshua.
As you wrote about medical advancements i thought about Matt who when he was 16 was diagnosed with cancer and wasn’t expected to live more than 4 weeks because the disease had grown so fast and had metastasized from his abdomen to his lungs.
Medicine has always been advancing and new treatments are discovered every day. They gave him some very new drugs that were experimental at that time and he is cancer free today – and has been in remission for more than 10 years.
Please don’t give up hope. i know that you will continue to fight for your precious boy. he is so inspiring. i love to hear about his new accomplishments. Every day it seems that he is learning so much. Keep up the good work. God has special plans for Lucas – some of which I can already see being played out in your lives.
Becky Wasserman
January 14th, 2011 at 8:35 am
This is a beautiful post. Sad to read about Joshua but also inspiring. The struggles and questions you write about are some of the deepest in a lifetime. Your ultimate goal of being present is right on, it reminds me of the meditation I’m supposed to be doing and often put off… Much love, Becky W.
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