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Project Mikey – Living With Metachromatic Leukodystrophy (MLD)

 

Mother and son with Metachromatic Leukodystrophy (MLD) tenderly touching and looking into each other's eyes

Towards the end of last year, I started an on-going personal documentary family photography project I’m calling Project Mikey. I was inspired by a local Atlanta family, the Warechowski’s to document their family after hearing about their story of their son Michael (Mikey) Warechowski IV. Mikey is the only son of Katie and Mike Warechowski and he was born a perfectly healthy little boy who reached all of the typical milestones. At age 23 months, Katie and Mike became concerned when Mikey still couldn’t walk. After tons of tests, they received the unbelievable and dishearting news that Mikey had a fatal degenerative condition called Metachromatic Leukodystrophy (MLD).

MLD is a rare neuro-degenerative disease that affects the brain, nervous system, and muscles. There is no cure and it is fatal. Most kids with MLD live to be about 5 or 6. Since his diagnosis on Katie’s 31st birthday (March 27, 2012), Michael has lost all of his abilities: he cannot talk, eat by mouth, sit up or play. Mikey is fed only through a feeding tube, and he is heavily medicated, as MLD is very painful. The above video is an 11-Alive feature that covers the beginning of their story.

I started off this project visiting the Warechowski’s family 1-2 times a week, but after documenting a large part of their lives, we typically meet up about 1-2 times a month and for special things like visiting family. Sometimes I stay for an hour or so and other times multiple hours documenting everything they do.

Katie and Mike Warechowski getting ready for the day at 6:30am for son Mikey Warechowski living With Metachromatic Leukodystrophy (MLD)

In this post, I started my day with them at about 6 am through lunch when Mikey typically takes a nap. As you could imagine, they start their days pretty early making food for Mikey which blended for use in Mikey’s feeding tube. Each morning Katie writes a new cute pet name like Mr. Micheal Pie and Sweet Punkin Baby for Mikey on his feeding bag. Mikey’s feeding tube is connected most of the day slowly delivering the nutrients he needs. Katie and Micheal have to frequently suck out stomach acid from Mikey since he can not deal with on his own like most other people can. Suctioning his airways is another thing that they frequently have to do to ensure everything stays clean. There’s also diaper changes, baths, and other medical needs they keep up with along with the housework, and of course, both Katie and Micheal working at the gym they own Fitness Together

Project Mikey is an on-going project for me with no end in sight. I started documenting the Warechowski’s partly to be able to give back using my skill set and partly to be able to help raise more money for Mikey’s care. I will be posting updated blog posts as things progress and will include things like bedtime routines, school (yes, school!), bath time, doctor visits, trips, and much more so be sure to check back often to follow their story!

On behalf of the families that hire me for any family documentaries, I am donating 10% which will go to directly benefit the Warechowski family as medical costs are staggering.

If you don’t want to hire me to have your family documented, you can also donate directly to the Warechowski’s using their GoFundMe set up by Elizabeth Cossick from Black Dress Red Wagon Magazine. You can also follow their journey on their Facebook page

Katie Warechowski making food for her son Mikey Warechowski living With Metachromatic Leukodystrophy (MLD)Mike Warechowski preparing medicine for son Mikey Warechowski who lives with Metachromatic Leukodystrophy (MLD)Micheal's Room sign art hanging on wall in Mikey Warechowski who lives with Metachromatic Leukodystrophy (MLD)Miles For Mikey charity 5k run art hanging on wall in Mikey Warechowski who lives with Metachromatic Leukodystrophy (MLD)Child's book case filled with books in Mikey Warechowski room who lives with Metachromatic Leukodystrophy (MLD)Katie Warechowski waking up son Mikey Warechowski who lives with Metachromatic Leukodystrophy (MLD) by rubbing his foreheadKatie Warechowski waking up son Mikey Warechowski who lives with Metachromatic Leukodystrophy (MLD)Katie Warechowski removing son Mikey Warechowski who lives with Metachromatic Leukodystrophy (MLD) breathing tubeKatie Warechowski snuggling with her son Mikey in his bed who lives with Metachromatic Leukodystrophy (MLD)Stomach acid sucked out of Mikey Warechowski stomach from living with Metachromatic Leukodystrophy (MLD)Katie Warechowski changing her son Mikey diaper who lives with Metachromatic Leukodystrophy (MLD)Katie Warechowski hugging her son Mikey who lives with Metachromatic Leukodystrophy (MLD) in the early morning lightGenerations of Micheals picture frame with mom and son reflection in mirror in backgroundMikey Warechowski who lives with Metachromatic Leukodystrophy (MLD) feeding bagKatie and son Mikey Warechowski who lives with Metachromatic Leukodystrophy (MLD) laying in bed with tender nose snuggles Katie and son Mikey Warechowski who lives with MLD laying in bed holding hands in the early morning lightKatie Warechowski cleaning out son's nose with suction tube who lives with MLDKatie Warechowski folding clothes in-between taking care of her son Mikey Warechowski who lives with MLDKatie Warechowski worn out from house work and taking care of her son Mikey Warechowski who lives with MLDKatie Warechowski working at home between taking care of her son Mikey Warechowski who lives with MLDMikey Warechowski who lives with MLD sleeping on bed with feeding tube

My name is Matt Druin and I’m an Atlanta family photographer that specializes in Raw + Unfiltered Day In The Life family documentaries. I have photographed families all over Georgia from Atlanta to Woodstock, Acworth, Kennesaw, Roswell, Alpharetta, Canton, Johns Creek, Savannah, Macon, Augusta, Columbus, Duluth, and tons of other cities. I also travel anywhere in the world to capture amazing family vacations, travels, and stories.

Contact Atlanta Family Photographer Matt Druin

Email [email protected]

Phone 678-551-0115

Portfolios www.matthewdruin.com

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