Monday, May 23, 2005

24 Hours for Gwen

24 Hours for Gwen
love meditation hope positive intention community vigil

Twenty-four hours of spiritual community,

culminating in the Service of the Living Tradition

9:15 am June 11, 2005 through 9:15 am June 12, 2005

This is a copy of a letter that has gone out to members and friends of the Unitarian Society of Northampton and Florence, to friends and family of the Lorimer family, and now, to the broader world. Please join us from wherever you are.

Dear Friends,

We are writing to invite your participation in an event to sustain, nurture, and bring hope to a family within our community.

Many of you know three year old Gwen Lorimer and her family—parents Sue and Kim Lorimer, and big sister Abby. You may be aware of Gwen’s battle since birth with mitochondrial disease .

This summer Gwen will undergo another major surgery to insert a new kind of feeding tube. Gwen’s doctors and family are feeling a lot of hope about this procedure which may be a more successful solution than those previously tried. At the same time, there is concern that if this option fails, the doctors are running short of new approaches.

As a religious community some of us have wondered how we can provide support to the Lorimer family as they face the challenge of a seriously ill child. At this time of hope and anxiety we have decided to join with them by holding a 24 hour vigil for Gwen. The event will be held in the Great Hall for the 24 hours preceding the Service of the Living Tradition. Participants are invited to bring a candle to place on a table at the front of the Great Hall so that the hall will be lit in celebration of Gwen and reflection of our hopes for her. There will be child care available in the Social Room from 9 am – 2 pm on Saturday.

What you can do:

  • Join us in the Great Hall at any time and participate in whatever manner feels right to you—Prayer, meditation, and the sending of healing thoughts and intentions.

  • Join us from wherever in the country or world you are, and participate in whatever manner feels right to you—Prayer, meditation, and the sending of healing thoughts and intentions.
  • Sign up for a shift in the Great Hall —We want to be certain that the Great Hall will be occupied for all of the 24 hours it will be open, signing up will help us ensure that.
  • Sign up for a shift as host. We need hosts to ensure that coffee and tea are kept fresh in the Parlor, to stand by the information table, and at night, to provide a watchful eye so those in the Great Hall remain undisturbed. Please commit to a specific time by signing up on the poster in the Parlor or by calling Cindy at 584-1390 x. 203.
  • Bring a candle to place on the table.
  • Participate in a phone tree to encourage others to participate.— Email me and I will forward your interest to Lynne Marie
In Community,

Lynne Marie W. for the Religious Education Council
and Cindy , Director of Religious Education

When we see Gwen, she looks so healthy!
What is Mitochondrial Disease, anyway?

Mitochondrial Disease is a rare and serious disorder. It is a miracle that Gwen is with us, and every day we are thankful for the gift that is her.

On a cellular level, mitochondrial diseases affect the cell's ability to produce life-sustaining energy, and result from failures of the mitochondria. Mitochondria are specialized compartments present in almost every cell of the body (not red blood cells). Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth.

On a whole body level, mito disease basically means that something could go wrong with any organ at any time and at any speed. There is no cure for the dys-function in Gwen’s cells. The disease is progressive although there may be long periods of stability.

In Gwen’s case many different organs are involved but it’s her belly and GI tract that are most affected – she can’t eat food. People with this type of Mito disease need to be fed by a g-tube into the belly, or a central line into the blood system. Because g-tube feeds weren’t successful for Gwen, she gets 100% of her nutrition through her veins. Every day she is connected to “TPN” which runs for 20 hours a day. Unfortunately, as much as TPN has been life-giving, it also causes serious long-term damage to her liver. This summer they are going to do surgery to try a new kind of tube that will feed her a special formula directly into her intestines and minimize the damage to her organs.

It is not possible to predict the course of this disease. For Gwen, one change in her treatment to help her with one problem may have a negative impact on another body system. Because of this, and because this is a disease of the cells themselves, treatment is very challenging. When something goes wrong, it’s rarely a little wrong, and her body reacts with great tumult.

You can get general information about mitochondrial disease by visiting

As Unitarians in community, we choose to journey together. A complex disease like this is one which only a few scientific specialists can begin to understand. But we can stand with Gwen and her family. We can walk with them, and pray and meditate and join them on this journey in a very real way. Our thoughts, prayers, and positive intentions can be directed toward Gwen’s cells, her organs, her quality of life, and her family.

1 comment:

Anonymous said...

I found your blog while searching about mitochondrial disease. I hope Gwen is well. My daughters are affected also. Good thoughts and prayers.... Suzanne
blog of inspiring stories for special needs moms