The Dance

balloon being releasedHannah is with us – every moment of every day.  I can still feel her, imagine her sweetest soft skin and her little kissable mouth.

 One year ago tomorrow she passed away.  I have been thinking so much about the fact that she would be just over two years old right now…but it feels like it has been a decade since I was pregnant with her.  At the same time, the year has flown by – I can’t believe it has been a year.

 What seems an amazing, perhaps ironic twist – we just learned that the genetics team at Seattle Children’s Research Institute has been able to diagnose the gene mutation that caused Hannah’s sickness. 

 For a year, the team has been studying her gene sequence (and ours as well) to see if we might get an answer.  We have it.  We meet with Bill Dobyns, the researcher that has been leading the effort next week to get the details, but it appears Hannah had a “spontaneous mutation” of gene ATP1A3.  They know that it was a spontaneous mutation rather than a passed on condition because neither Greg nor I have the mutation.  Thankfully that means that Wes does not have it either – somehow this gene mutated in Hannah.  I’ll share more in the coming weeks as we learn, but attached is a link to an article that helps lay things out in the simplest terms I could find:

http://www.dukehealth.org/health_library/news/gene-discovery-set-to-help-with-mysterious-paralysis-of-childhood

 What is very unusual for us is that the onset so early in Hannah’s life is not a common trait of this genetic mutation, nor is the severity of the condition – in fact from what we understand, the way that this mutation attacked Hannah has only been seen in mice and not documented in humans.  There are not currently any therapies to treat this disease, but each case that is diagnosed helps to deepen the understanding and leads to new research.  Perhaps a family that has a child with similar symptoms to Hannah’s can test for this gene mutation and have an answer to what is happening to their child.

 I have many times referred to Emily Rapp, the mother of Ronan, a little guy with Tay-Sachs disease (she is the author of the “Dragon Mom” article).  After his diagnosis at 9-months-old, Emily wrote a blog about her experiences knowing that her son would not survive.  She has turned her blog into a wonderful memoir, “The Still Point of the Turning World”.  I have the book but am not able yet to read it fully.  I have read and listened to a number of her interviews, and she spent time with NPR’s Terry Gross this week talking about her book and experiences.  http://www.npr.org/2013/03/18/174419920/still-point-a-meditation-on-mothering-a-dying-child

 Having a diagnosis gave Emily time to process letting go – we had that, too, but it took us much longer to get to a place where we knew we would focus on Hannah’s comfort because nothing else was working.   For us, time was truncated into a few months of comfort care.  After a year of trying every type of seizure medication, we couldn’t help control her epilepsy.  Now we know it was due to this gene mutation.  

 We hope that part of our sweet baby Hannah’s legacy will be to help document this gene mutation, and offer another clue for Neurologists to investigate when a baby presents like ours.

 So tomorrow, we hold each other close.  We go to the edge of the water to Hannah’s bench, look out to the city, release balloons with our special messages up to heaven, and continue to dream about our wonderful, amazing baby.

 This little girl below moved me – I don’t even know where I found this image, but it was in my photo stream on my Iphone as I was browsing today – I must have saved it close to a year ago.

This is how I picture Hannah – in a field of flowers playing and dancing – our sweet 2-year-old lover of life.

Hannah at 2

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14 Responses to The Dance

  1. Thanks for sharing what you’ve learned about Hannah’s illness. I think of her often and will especially tomorrow. Sending you love and wishing you peace.

  2. Keep that energy of the wave with you Allyson, as it transforms into a better understanding. We are here for you…

  3. Thinking of you more than usual and sending extra love your way.

  4. Wishing you peace, sweet memories and love tomorrow, and always. I’m so glad that you are getting the information that you have been waiting for.

  5. Loren McEwan says:

    Thanks for sharing Allyson, so glad to hear of hope and answers for those to come. May you be surrounded in love and peace tomorrow for what is…thinking of you all on this new spring day; whatever it will be, you are loved.
    Loren McEwan

  6. Kelly Snow says:

    Holy Moly Chills. What an amazing accomplishment – the years, months, days, and hours of studying and waiting, the trying to understand. Hannah is and was a beautiful gift. I know the doctors and team at Children’s think of her often and will be celebrating her tomorrow with you. Hearing them speak of her only clarified for me just how deeply one “little” soul can reach into someone’s spirit. I am thrilled for you to have an answer – to know you, Greg, and Wes were not to blame and will not, in the suffer wondering. Tomorrow Hannah will pick some tulips and present them to you. To her warm, loving parents and her proud, caring big brother. You all amaze me. Love from me!

  7. Thank you for sharing. Thinking of you and sending you much love.

  8. Sending love to you and your family

  9. Robin Gaphni says:

    Allyson,
    I will be holding all of you close tomorrow and will light a candle for Hannah. Your sweet girl is with all of you forever. Sending you love.
    x,o

  10. Sending you love Allyson. Thanks for sharing and opening your heart.

  11. Thinking of you and your Hannah today with love…

  12. Love you guys so much Auntie Al, I’ll be thinking of you and sweet little Hannah today. Lots of hugs and love to you!

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