Why I Care Walk: Melissa Mannara

April 29, 2014 – Melissa Mannara is one of the captains of Team Jovi, which is organizing a wonderful Care Walk in Rochester on May 4.  (You can support it and learn more about it by clicking here!)  CAF spoke with Melissa about why she is putting so much effort into a Care Walk this year.

CAF: Tell me a little about how you got to be connected to CAF and your experience with thalassemia.

Melissa’s son, Jovi

Melissa: My son, Jovi, was diagnosed with thalessemia at 9 months old.  We were lost beyond words.  I am not sure exactly how we found CAF because when Jovi was diagnosed my husband and I did everything we possibly could to find the best doctors and help we needed.  Somehow we either stumbled across CAF or were guided to it.  Either way we are ever grateful we got connected.

Our experience with thalassemia has been an emotional one thus far.  When we were first sat down and told our son had thalassemia we were also told he would not live much past his teen years.  It was beyond devastating and heartbreaking.  We quickly learned that was not true.  As a parent it is so difficult to watch my innocent child go through what he does on a monthly basis in the hospital.  I fear for all the complications that go along with blood transfusions and chelation.  If I had to explain thalassemia in one word it would be, heartbreaking.  It is heartbreaking, because my son is only 2 years and does not understand what is going on yet.

 

Please tell me how long you have been involved with Care Walk and what your plans are for the Walk you are doing this year. 

This is our 2nd year doing the Care Walk.  My plan was to have the walk this year better and bigger than the previous year.  My main goal for the Care Walk is to raise awareness to the public.  It is so important to educate people on this rare disease.  The more people know the closer we are to a cure.  I don’t want thalassemia to be a disease in the dark, I want people to be familiar with the word and fighting to help find a cure.

This year I am having the walk inside of a NHL sized hockey rink (no ice of course).  There will be tons of fun activities for the children such as a bounce house, balloon artist and face painter.  There will be several forms of entertainment from local dance teams to musicians.  There will be a silent auction/raffle as well as complimentary chair massage for all those hard working walkers!  I have also coordinated a blood drive through the Red Cross and I have had a great response thus far on blood donors.  I have even pulled the heartstrings of some first timers who are afraid of needles but are ready and willing to donate on May 4 in honor of my son, Jovi.

What makes you want to volunteer to help CAF?

Melissa, Jovi & Mike

Melissa, Jovi & Mike

Everything I do for CAF is for my son.  I sometimes feel helpless as a mother by not being able to cure my son.  I can’t magically take thalassemia away from Jovi.  I do have the ability to volunteer and help fight every day to help find a cure for him.  Volunteering gives me hope and is the only  way I know how cure my son.

I will never stop fighting for him.  I want to be a role model for my son.  I want him to grow up not feeling sorry or ashamed for what he has.  I want him to see that you can take anything negative and find the positive out of it in life.

What do you like about CAF/see as its value? 

I think CAF is an amazing foundation.  Since Thalassemia is such a rare disease, it has a small amount of people connected to it verse some of the other huge foundations out there.  We know everyone at CAF and they know who Jovi is.  It is like an extended family that is there to help give support and comfort.

CWLocations2014If you could describe CAF in one word, what would that word be?

Hope.

Melissa and everyone helping with the Team Jovi Care Walk is helping to spread hope – as is anyone who plans a Care Walk, participates in one or supports a Care Walker.  We gratefully thank all of you – and if you have not become involved as a Care Walker or a supporter, do so now!  Find out more by clicking here.


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