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A littlest hero!!

This “little hero” and her family has inspired and touched me so very much.  I find that I sometimes put off writing/ posting things that mean so much to me.  Feelings can be so difficult sometimes to put into words…

As some of you may already know, I have been volunteering with the The Littlest Heroes Project, a charity organization whose mission is to help provide and capture memories for families who are dealing with hectic schedules due to having a child who is suffering from a serious illness or life altering disability.

Through The Littlest Heroes Project, I was introduced to Sammi and her family.  And, well…. WOW.  They are absolutely amazing people!!  Without going into too much detail, Sammi suffers from a severe autoimmune disease and has many complications and other very serious health concerns.   Sammi is the youngest of 4.  Each of her siblings, Lauren, Amanda and Matthew are, for lack of a better term, really awesome people.  🙂

Very unfortunately, it is not only Sammi that deals with major health concerns and threats.  For their privacy, I won’t delve into details, but please know that this family has had to deal with more than one family should ever have to bear.  It really just makes you want to, at the very least, stomp your feet and scream that it is just not fair.

Truthfully, I only got to spend a few hours with this family, but I was touched beyond words at their patience, unity, compassion and strength.

The day that I met with Sammi and her family was just a week before she headed to CHOP to prepare for and receive a BMT (bone marrow transplant).  Her close family and friends pulled together a wonderful surprise party for her just before she left.  Since Sammi had mentioned that she had wanted to bring a small album of photographs with her for her extended hospital stay….. her Mom, LeeAnne, contacted me to attend the party and take some snapshots of the family.  We had tried a few times to set up a session on the beach over the summer but schedules and complications got in the way and prevented the session from happening.  When she told me of her idea, I knew I just had to attend.

Anyway, I arrived at their home and met Sammi, a gentle girl with a beautiful smile and an obvious affection towards animals.  In fact, that can be said for the entire family.  They have 2 cats, an amazing amount of birds (parrots, hens, finches, etc…),and at the time, an adorable hamster named Honey.  Sadly, Honey passed away soon after I visited.

Oh, I didn’t mention that when I met Sammi she had pink hair!  Knowing that she would be loosing her hair very soon, she asked to dye it pink.  I am told that Sammi is normally a brunette…. so this mix of blonde and pink was quite a change but so beautiful and funky!  I really loved it

Anyway, we got started and did a bunch of group photos with Sammi, then it was time for food, stories and laughs.  I stayed and did some candids as well.  Their home was so inviting and there was just an overwhelming feeling of warmth and love.  It was really amazing to be there as a witness to that.  I left there feeling really touched.

Since that time, I have followed them on their online Caring Bridge journal that has continued to document this long and painful journey.  Needless to say, I have learned quite a lot about BMT and other medical conditions that I was, truthfully, quite clueless about.  I have also been witness to the tremendous hardships that people in this world endure and how such a young girl and a family comes together to provide strength and reassurance for one another when the odds are so tremendously stacked against them.

Sammi, her Mom and Dad basically lived together at CHOP for a full 7 weeks and 3 days.  Sammi was unable to receive too many visits due to the hospital restrictions.  They try to keep the unit as clean and clear of bacteria as is possible.  I can’t imagine just how much this family must have missed each other.

I worked diligently to get the photographs and a small spiral album together to give to Sammi before she actually went in for the official BMT.  Knowing that shipping the album would take longer, I drove over to the hospital on the morning of the transplant.  I knew that the hospital was strict with visitations, etc… and not knowing the family very well I really didn’t want to invade them with my presence.  I figured that when I got to the hospital that I could hand the care package over to someone and that they would see that it arrived in Sammi’s room.  To my surprise, I ended up being sent directly to the BMT unit.  Just outside the unit is a set of doors and a receptionist.  I thought, “Great, I will just leave it with her”.  More surprisingly, when I told her about the package she immediately picked up the phone and paged LeeAnne (Sammi’s Mom) to the desk.  I was shocked and was telling the receptionist that please that was not necessary but she had already called.

LeeAnne, not expecting visitors and normally unable to leave the unit, walked through the doors looking worried and on edge from the page.  When she realized it was me delivering the photographs she immediately appeared overwhelmed and relieved.  She was so happy to get the portraits before Sammi headed in for the BMT and we hugged and cried for a bit.  It was very emotional and though I really wanted to remain as anonymous and out of the way as possible…. it was really wonderful.  I mean, we are basically strangers.  It felt so good to hug someone who clearly needed a big hug.  It was a moment that I will always remember.

So, Sammi has since received her new bone marrow from a wonderful and brave stranger/ donor.  She continues to fight her battle which is far from over.  However, she is finally home where she belongs with her family, friends, pets and loved ones.

Sammi, you are inspiration to so many people.  Keep fighting.  You are amazingly strong and an inspiration to so many!  A true hero indeed!!

Thank you to all of you for allowing me to share in your lives.  I am forever changed.  You are continuously in my thoughts.  May this year bring new, wonderful and well deserved moments and memories to you!

Sheeeewwwwww!  Now that I have written my novel, here are some photographs from the day that I got to spend with Sammi and her family…..

Sammi (16)

Sammi (14)

Sammi (13)

Sammi (12)

Sammi (11)

Sammi (10)

Sammi (9)

Sammi (8)

Sammi (7)

Sammi (6)

Sammi (5)

Sammi (4)

Sammi (3)

Sammi (2)

Sammi (1)

Sammi (0)