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Meet the Muellers

Dec. 8, 2015 | Portraits

I've had the pleasure of knowing the Mueller's long before they were the Mueller's.  I've seen them run wild and free in their twenties, work under the same roof together, date and fall madly in love, find out they were expecting their first child together and then see their world suddenly flip upside down.  From complete laughter and joy came a time of sorrow and confusion as I sat by and watched them fight for their daughter's life.  I could never offer enough because there was never enough I could possibly do to try and mask their pain, let alone understand what it felt like. 

 

Tilly was born with five undiagnosed critical congenital heart defects.  Her cardiac diagnosis of Tetralogy of Fallot and Pulmonary Atresia is coupled with a chromosomal deletion 22Q11.2 (DiGeorge Syndrome), as well as serious issues with her immune system (Low IgG, which is transient), hypoparathyroid, speech delay, recurrent serious ear infections resulting in tube placements, and developmental delays.  She, along with her mommy and daddy spent nearly all of her first eight months living in the Cardiac ICU with many, many complications, stemming from infections from her first cardiac surgery, immune complications, renal failure, heart failure and feeding issues.  She has progressed amazingly despite all of these things and is a spunky, loving, tenacious five year old.  Since September of this year Mathilda has been in medication managed heart failure, and she and her parents are gearing up to begin the next big chapter in her heart journey. 

 

In January she will be starting a series of procedures to try to repair the issues she is having with her heart.  This first catheterization procedure will be one of many to come in the next few months.  But as for her long term future, well.. that's what Lisa and Nick are trying to provide her with.  Hope and a future.  They have laid down the groundwork as her parents, assembled a team of physicians at a qualified medical center and now lay the rest in Gods hands.

 

Tilly is in need of your prayers and thoughts as she and her family press on toward the emotional roller coaster and physical difficulties that lie ahead.  That is the best thing you can do for the family, but if you'd like to read more about Tilly and even help donate she has a GoFundMe where you can find here.  I encourage you to check it out and help the Mueller's in their journey to give Mathilda a future. 

 

Lisa and Nick, I love you guys and admire you in so many ways.  Thankful to call you friends and witness your strength and determination as it inspires me to be a better parent and not take a single day for granted.  Thank you for being so amazing and strong for Tilly and keep fighting the good fight. 


Tilly, you are so sweet and full of life. Love the little girl you have grown into.
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