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In memory of
Welcome to MitoAction Memories
We are parents who have 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 on MitoAction's closed Memories Facebook page, 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.
Please email us at firstname.lastname@example.org.
Sharing our grief stories
My experience with disease and grief, by Anita Opitz
It is hard to believe that on September 4 this year it will be exactly five years since the passing of our daughter Caroline. She was only 10 years old. Looking back to that day it sometimes feels as if it was a nightmare or a horrible movie –- but unfortunately it really happened. Everything has changed and nothing will ever be the same without her. I admire all couples who manage to stay together caring for a sick child and dealing with grief. In our case, it did not work out and I know that we are not the only ones. Having a sick child sure is a challenge for every relationship. Both of us were in pain but as our lives were so different –- him working and I at home with the kids -– our needs to deal with the pain were completely different as well. Our divorce was final a little over three years after Caroline’s passing. Everything that has happened still is difficult to grasp.
Finding a new normal, by Kristi Strawser
My story with grief of course begins with a loss, the loss of my beautiful daughter Corynna. Corynna was my daughter, my best friend, and my life.
How do you continue on after losing someone who was so much? I have gone through many stages of grief as most have. I don’t think we focus enough on what grief is like for a parent who is also a caregiver of a child with a long-term illness. I remember the first night I slept in my own bed. I had slept in my daughter’s room the last months of her life. She kept the TV on when she slept. I would hear the BiPAP and the oxygen machine. I slept on a futon in her room.
Puppets help families explore grief, by Mary Ann Schwenk
I am notified that a family is seeking a play therapist counselor to work with their two daughters. The younger child is at home with hospice staff and needs someone to help her. The older girl, 12, is trying to be strong but needs support, too. The parents are beside themselves in how to deal with grief and loss. On the first day’s session, their mother walks me to the door and from there I am alone with the girls.
Meet the committee
Jessica Shriver has a background in biology and biochemistry, as well as an MA in Theology and an MS in Bioethics. Her husband and two children inherited a genetic disorder affecting mitochondrial function and connective tissue, resulting in a spectrum of symptoms and multi-system organ dysfunction. Her oldest child died in 2011, shortly before her fifth birthday, as a result of multiple organ failures and intractable infections. Jessica works in patient advocacy and medical ethics, and has a particular interest in families navigating pediatric end-of-life decisions, as well as pediatric bereavement.
Anita Opitz has been living in the United States since November 2002. She was born and raised in Germany, and lived in Paris for three years. Her daughter, Caroline, was born in France in May 2001. Caroline was diagnosed with diabetes in July 2004 and with Kearns-Sayre-Syndrome -- a very rare mitochondrial disorder that affects 1 to 3 in 100,000 -- in December 2006. Caroline was a very happy little girl who never complained and enjoyed doing whatever she could do. She loved to color and look at books for hours. In September 2011, at age 10, she lost the battle against her disease, and life will never be the same without her. During her short life, Caroline touched the hearts of so many. Unfortunately, Anita's marriage did not endure the hardship of dealing with the disease and Caroline's passing and ended in divorce in April 2015. Anita is currently working part time as an Order Administrator for Stratus Technologies. She decided to go back to college and is completing her Bachelor’s degree to obtain a Master’s degree in Counseling Psychology. She lives in Concord, MA, with her 11-year-old son, Gabriel, and their dog, Ariel.
Kristi Strawser’s daughter Corynna passed away from mitochondrial disease in 2013 at the age of 16. Corynna was born a healthy child with just some minor gastrointestinal issues until she entered her teenage years when she began a rapid decline. She suffered from multisystem organ failure. She spent the last year of her life educating others about mitochondrial disease hoping that one day every household would know what Mito was and ultimately hoping for a cure for others. Corynna took part in a documentary about mitochondrial disease in the last two months prior to her death. Corynna and her family were very public with the her end of life story. Corynna had both palliative care and hospice at the end of her life and her parents continue to teach others about these services. They promised Corynna they would continue to fight for research and a cure for this mitochondrial disease. They are very active in supporting, educating, and advocating for others affected by this disease. They are also committed to carrying on Corynna’s legacy.
Deb Lee Gould
Deb Lee Gould, MEd, is a bereaved parent since 1985 and a Grief Consultant in Okemos, MI. She is also Co-Founder and Director of an all-volunteer 501(c)3 nonprofit and international Family Support Group for rare Fatty Oxidation Disorders (www.fodsupport.org), as well as an ordained non-denominational spiritual counselor.
The FOD (Fatty Oxidation Disorders) Family Support Group™ was "born" in 1991 as a way of dealing with the sudden death of her and her husband's 21-month old daughter, Kristen, in 1985 from undiagnosed MCAD. Initially, she was "diagnosed" with Reye's Syndrome and it was not until one year later, when their son, Kevin, was born and diagnosed with MCAD that they discovered Kristen also had this rare metabolic disorder. Their third child, Brian, is a carrier of MCAD.
Along with running the Group, Deb offers pro bono one-on-one grief support (locally face-to-face or by Skype) to parents and other adult family members and friends living with the death of a child of any age and from any cause (www.bereavedparent.com). Support is offered early in grief or many years down the road. Deb received her Masters in Counseling in 1993 with a specialization in Grief Counseling.
Mary Ann Schwenk
Mary Ann Schwenk, of Coopersburg, PA, has been a caretaker of two young women with Mito. She quit her job counseling children and their families to devote more time to her daughters. She spent many hours in hospitalizations, seeing specialists, and trying to maintain family life. She and her family have two collies and two kittens as pets are an important part of her family. Both of Mary Ann's girls attended college and graduated with honors. Mito reared its ugly face when the girls were in high school and in college. Dr. Korson, a Mito geneticist, diagnosed them clinically as having Mito. He introduced the family to the Mito Cocktail, too. On April 13, 2015, Mary Ann and her husband lost their 34-year-old daughter to a seriously fatal necrotizing form of pneumonia and respiratory failure. This weakened her body majorly, a body already dealing with different concerns of MIto. Both daughters required IV TPN 24/7; however for almost 6 weeks, IV TPN was not available to them. This furthered weakened both of her daughters' health. Both were hospitalized with serious infections. However, Mary Ann's younger daughter lost her battle while she kept her Faith through this difficult trial. During her hospitalization she often reached out to medical folks with her humor. Her older sister came home but misses her sister greatly. The Schwenks' younger daughter was a blessing to many who knew her because she supported others and loved people as well as gave them kindness, respect, and dignity, no matter their health or emotional status. Mary Ann and her husband are going through the grieving process, too. She is hoping that she can be of assistance to those who lose a family member who has Mito. She looks forward to being supportive and encouraging to Mito families. Her daughter left a legacy of Hope, Faith, Love, and Peace: a legacy that is meaningful to Mary Ann to carry on to others in the Mito community.
Please share a photo and a memory on our Light A Light page.
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
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
Special Care Series, by Doug W. Manning
Have you found a resource not on this list that might be helpful to other families? If so, please let us know.