Maryrose Sullivan Mirick - Rare HES

Hello my name is Maryrose Sullivan Mirick. Please read my story. I Suffer from a rare Bood Disease, causing cancerous cells and organ failure. The disease is called Hypereosinophilic syndrome (HES) a mysloproliferative disorder (MPD) characterized by persistent eosinophilia that is associated with damage to multiple organs (a blood cancer, much like leukemia).  I have been a patient of Tufts Medical Center for 40 years. Doctors told me I would need organ transplantation  in future years.   I have had one organ transplantation.

I am a wife of 41 years, to Wayne Mirick.  A mother of two lovely young ladies Andrea & Jackie.   A grandmother of the best 10 year old little girl, Juliahna Rose Pruitt.   I grew up in a duplex in Quincy, MA.   My family, 7 Sullivan's sibling plus parents on one side, 7 cousins and parents on the other.  Grandparents lived on the 3rd Floor.  I became a passionate Red Sox Fan at a very young age.   My Dad and Uncle belonged to the BoSox Club.  Two big Irish families, you would have thought the name Kennedy was a religion, Red Sox the Apostles, and Fenway Park the Promise Land. It was only a few years ago went to my first Red Sox game at Fenway, as I was a sickly child. I am a  graduate of St. Ann's School '67,  NQHS '71 ~ both in Quincy, MA;   Aquinas College '73, Milton, MA;   and UMass Plymouth Campus, MA, 2005. 

At age 23yrs. my life changed forever, as I felt my first fear of my mortality. I was told I suffered from a rare blood disease, Hypereosinophilic Syndome (HES).  I was so young that I could not imagine my life would not be the full happy one we all imagine when we are growing up. So that day I made a decision to live my life the best way possible.

I have volunteered for many non-profits, and find it easy to raise money for others, but very difficult to do so for myself, but I believe at this point it is necessary. Like many in my position, I needed  to stop working before full retirement time, which effects retirement benefits.  I get my disability check once a month, yet it doesn't go far.  I have volunteered over many years and participated in studies of this rare disease.  Due to these studies, and brilliant researchers, more victims afflicted have been diagnosed, and lives have been saved.  I feel very fortuate to have lived this long, but the disease is becoming more active.  I always say "I am still on this side of the lawn".  I thank my faith, belief in God, all the prayers, love and support from family and friends for giving me the strength and ability to fight to live as full a life as possible.  Life may throw frost heaves on the path of your road, just keep driving.

In the early 1980's, my disease rapidly progressed and doctors feared I would succumb to kidney failure.  In 1983 my sister unselfishly donated one of her healthy kidneys to me April 27, 1983 ~ thirty-two years ago.  Research is being done to see if I am the longest surviving organ recipient living on one transplanted kidney.  When I speak to those waiting for organs or worried about donating, I  just happen to mention the year my sister donated one of her healthy kidneys to me, and the room lights up, and fear seems diminishes.  As HES is known for attaching organs, the reality of heart failure became worse for me in the 1990's to present. After much testings and treatments, I was place on a heart transplant list in 2010.  I am now, with the advice of doctors, aggressively  treating my disease increased chemo. 

As one of the American Heart Associations (AHA) "Go Red Campaign" spokes women, I  pray that I have made many aware of the benefits of living a healthy lifestyle.  I speak at many events, attend programs, pose for pictures, radio ads, and am part of life awareness quotes on billboards. I also speak at other health and organ donation opportunities. Never doubt the power of love, prayer, support, and caring dedicated medical professionals doing all they can on your behalf. 

I am on 27 or so medications and in the last 5-10 years increasingly being admitted to the hospital. I have good insurance, but the medical co-pays, for doctors, prescriptions, hospitals, emergency room needs and  transportation etc. are building up.  

Now Medical Professtionals inform me that my home (interior and exterior) should be made handicap accessible if I am to continue to live a good quality of life. The list includes one floor living (which my home can do), handicap ramps , complete handicap bathroom, wider hallways, stair chair, garage if possible to avoid extreme heat and cold which affect blood pressure.  Laundry appliances on one floor living, and bedroom.  This also means relocating /moving plumbing, electricity, Walter pipes,  and the list goes on. There are many more items on the list, but you get the point.

Our daughter, who had emergency surgery for a tumor, is now living in our lower level with her daughter.  This is also a concern to my husband and I. We help her as much as we can. She  put herself through college after a difficult ending of her marriage.  She is working hard to make a better life for her and her daughter.  We are so proud of her and our other daughter for the strong women they  become.  We adore  our granddaughter, and look forward to being with her before and after school.

I priced the handicap acceptable work needed on our home that medical professionals recommend. The construction quotes to make our home a handicap accessible for my medical needs,  along with our keeping up with medical bills, will run approximately $24,000-$35,000…well I was overwhelmed. That is a lot of money to ask people to support, but I have no choice.

I am honored to have, volunteered for the following Organizations:  Presently Spokesperson for the MA American Heart Association; Former President of the Ambassador Group for So. Shore Chamber of Commerce; Paul Harris Fellow of The Quincy Rotary Club; Former Board Member of the Women's Business Network; Former Board Member of the American Red Cross, Eastern MA; Former Board Member of the Quincy Business Association; Former Board Member and Founder of the Quincy Medical Cancer Walk; Former Member and present volunteer of the National Kidney Foundation Fundraising Committee.

There is life after cancer, heart failure and kidney failure. You must stay positive, eat healthy, and exercise...but most importantly ~ love and live life to the fullest. Respect the body you live in...treat it right, and it will do the best it can for you. Never ever give up on the prize....after all the prize is living.

All momentary and In-Kind donations are greatly appreciated. I will post pictures of construction and stages as I get closer to the goal.  If the the goal (or close to the goal)  after an adequate amount of time, is not met, or I get enough in-kind donors/donations to bring construction to fruition for the cost of what has been raised, I will stop the campaign.  

I will never forget the kindness so many have show.  I remain,

Respectfully your,
Maryrose Sullivan Mirick
  • Anonymous 
    • $100 
    • 71 mos
  • Anonymous 
    • $10 
    • 71 mos
  • Morgana Brennan 
    • $50 
    • 71 mos
  • Christine Brennan  
    • $100 
    • 71 mos
  • Robbie Berg 
    • $50 
    • 71 mos
See all

Organizer

Maryrose Sullivan Mirick 
Organizer
Weymouth, MA
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