Monday, June 18, 2012

Little Miss Morgan.

I often say 'I'm blessed' when I refer to the fact that I get to do what I love as my career.  But one of my biggest blessings in photography actually came in the form of a little girl I met late last year.  Little Miss Morgan.

Morgan's Mom reached out at holiday time with what you would think was a simple request- she wanted one image with her daughter's eyes open.  Now I get many requests- mostly for real smiles, but eyes open?  I quickly learned that Morgan is on a lot of medication for Dravet Syndrome.  She is very sleepy and it's hard for her to keep her eyes open, especially after the meds are administered.

When you look up what Dravet Syndrome is, it's enough to make you break down and cry.  I never even heard of this rare gene mutation until I met Morgan.  Dravet Syndrome is a rare and catastrophic form of intractable epilepsy that begins in infancy.  Morgan faces a lot of seizures brought on by many things and her immune system is severely compromised (you can read more about it on the foundation site HERE).  She has her challenges, but Morgan's parents have surrounded her in a blanket of love.  Her mother truly is my hero.  It is my sheer pleasure to film her and her family and though they are making a big move soon, I promised them I would travel to wherever Morgan is to continue to film her.  They are stuck with me :).

This Summer I will be hosting a morning of super minis for super Morgan.  I will be donating all profits made through the minis to her family to help with their expenses.  Hospital trips unfortunately are frequent.  So I urge you if you are interested in hearing more about the super minis, and becoming involved with the cause, please email my photo assistant Amy to be placed on Morgan's list.  You can reach Amy at amy@jellybeanpics.com and please put 'Morgan' as your subject line.  We just need your email to know you want to help.  Here's Curly Q. herself...peaceful in Mommy's arm.




8 comments:

T said...

Jen, you are a living angel. Morgan is blessed to have you in her super corner. xo

Jamie said...

What a touching image. Love the donation idea as well. I hope it's a smashing success and raises lots of money!

JBrager said...

Thank you for sharing Morgan's story... I'd also like to schedule a mini session to help this little girl and her family.

Christin Filipelli said...

Yay, Super Morgan!! Sign us up!!

Jessica Greenfield said...

What a wonderful thing to do. Beautiful little girl.

Anonymous said...

Wow,brought tears to my eyes. She is precious and so are you for shareing her story!

Anonymous said...

My son Nathan is 7 and is Morgan's little seizure brother. Thank you so much for everything you are selflessly doing to help raise awareness and funding for our earth angels. All money donated to Dravet Syndrome Foundation goes to research for more effective and less harmful treatments, and to the parents directly for expensive medications and medical equipment they may not be able to afford otherwise. Thank you all so much, hopefully in the next few years no more of our angels will have to leave the enourmous love of their earthly families.

Jennifer Tonetti-Spellman said...

Thank you all for taking the time to read about Morgan's (abbreviated) story here. And thank you to my clients who have emailed to already sign up! Nathan's Mom, thank you for taking the time to write. Dravet Syndrome is now going to be JellyBean's charity moving forward. So all my charitable efforts going forward will relate back to the Dravel Foundation. I hope to make a difference and continue to raise awareness and funds for Morgan, Nathan and all the little angels.

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