In memory of

Welcome to MitoAction Memories 

We are four parents who lost children to mitochondrial disease, and we hope to be a support to other parents and family members who have lost a loved one to this heartless disease.  We hope you will share a photo and a memory on our Light a Light page, check out the resources to see what might be helpful, connect with others in the grief and loss forum, and contact us to let us know how we can support you at this difficult time.

We know from personal experience that grieving does not end in weeks or months. The journey changes. There is light and the good memories remain.

Our best to you.

Anita & Candido and Maggie & Patrick

Please email us at memories@mitoaction.org.

Meet the committee

Anita Opitz is German and moved to France in 1999 where she met her husband, Candido Pereira Duraes. They lost their daughter, Caroline, to Mito at age 10 on Sept. 4, 2011. Caroline was born on May 16, 2001 in France. The family moved to the United States in November 2002 and has since been living in Concord, MA. On Sept. 13, 2004, their son, Gabriel, was born. Two months before, Caroline had been diagnosed with diabetes and in December 2006 was diagnosed with mitochondrial disease. Candido has been working in business management and operations for an international semiconductor company for many years. Anita stayed at home for many years to take care of her children. From April 2010 until July 2012 she worked in customer service and marketing for a medical nutrition company. She started a new position in the international department of a medical device company in December 2012.

Maggie Orr and her husband, Patrick Mullane, live in the Boston area. Their daughter, Mamie Rose, died of mitochondrial disease in 2003 at age 10. For more than 40 years Patrick has worked as a drafter in a structural engineering firm whose projects include health care and research facilities, schools, museums, and housing.  Maggie trained as a Family Nurse Practitioner at Yale School of Nursing and worked in primary care with adults and children prior to taking time from her career to care for her children. She was the nurse coordinator in the Metabolism Service at Floating Hospital for Children at Tufts Medical Center for seven years where she primarily worked with individuals and families living with mitochondrial disorders.  She is currently a case manager at a biotech firm that develops therapies for rare genetic diseases.

Please share a photo and a memory on our Light A Light page. 

Connect with others in our grief and loss forum.

Resources

Boston area

The Children’s Room offers peer support groups for families with children who have experienced a death.  Parent(s) and surviving child/children attend at the same time.  Located in Arlington, MA.  http://childrensroom.org/

Fathers Forever is a fellowship of men who have lost a child.  They have monthly breakfasts and other activities.  http://fathers-forever.org/wordpress/

HeartPlay is an arts program sponsored by Parmenter Hospice in Wayland for children who have experienced the death of someone close to them.  http://www.parmenter.org/heartplay.asp

Massachusetts General Hospital for Children offers a monthly sibling/parent care group called “Club STAR (Sharing Together and Remembering).”  It is open to all families, not just former MGH patients.  http://www.mghpcs.org/socialservice/SupportGroups/Bereavement.asp

MA Pediatric Palliative Care Network, listing of hospices that provide pediatric services.  All offer support to families following the death of a child:  http://www.mass.gov/eohhs/gov/departments/dph/programs/family-health/pediatric-palliative-care.html

National

The Compassionate Friends is an organization that supports parents who have lost children. They have chapters in all 50 states, Washington DC, Guam, and Puerto Rico.  http://www.compassionatefriends.org/home.aspx

The National Hospice and Palliative Care Organization has information about grief:  http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3367

Camp Erin is a free weekend camp for kids ages 6-17 who have experienced the death of someone close to them. They have multiple sites around the U.S.:  http://www.moyerfoundation.org/programs/camperin.aspx

Contact your local hospice organization; many of them offer programs for grieving families.  To locate a hospice program:  http://iweb.nhpco.org/iweb/Membership/MemberDirectorySearch.aspx?pageid=3257&showTitle=1

Have you found a resource not on this list that might be helpful to other families?  If so, please let us know.