Sarah's Story


Images Captured by Melissa DePape Photography
www.melissadepape.com


The first few weeks of Sarah's life were spent in the hospital because she was unable to eat on her own.  A genetic test was done after she started missing milestones and an answer was found to the concerns her family was having.  Sarah was diagnosed with a rare chromosome deletion which has resulted in global delays and feeding obstacles.  Unfortunately, there are no other documented cases of the same deletion to date.

Since her diagnosis, her family has learned she also has a seizure disorder.  Sarah has started Anat Baniel Therapy, which has resulted in positive changes both physically and cognitively for her.  Through online groups, her mom has met other parents who have children with unique diagnoses, making the journey a little less lonely.

Now, at three years of age, Sarah can walk and works hard to keep up to her big sister Lily.  She is learning sign language and loves to attend preschool.  Sarah absolutely adores Lily, is extremely affectionate with her kitty and loves to dance.  Just like all other little girls, she manages to get herself into trouble - she can often be found climbing on everything. 
Sarah has recently found her independence; learning how to communicate her strong opinions however she can. 

Though it has been tough for Sarah's family to deal with an unknown future, this Tiny Light makes it all worthwhile. "As each month passes and we see her continue to grow and change, we are inspired by her smile and hard work. We will continue to work hard ourselves to supper her wherever her dreams take her."

written by Kristi Hall-Busque

Benjamin's Story

Images captured By HRM Photography

Meet Tiny Light Benjamin!  A mighty trooper!  Ben brings love and joy to those he meets.  Ben gives amazing cuddles, and his mom looks forward to their “treasured cuddle time.” Ben is a curious boy who loves to play with trains, computers, puzzles and videogames.  Dubbed “Puzzle piece kid,” Ben can master puzzles right-side-up or up-side-down!  WOW!  Mom says, “Ben is Ben, and he is the best!”


Doctors have been left baffled at times, researching and testing Benjamin, looking for a fitting diagnosis that best describes his needs, as well as the treatment and support that will support his needs.  Multi-challenged, ADHD, global delay and autism spectrum are just a few of the diagnoses that have been discussed at this point.  However, there is no cookie cutter diagnosis that fits right now.


At just two years old, Ben has endured and struggled with epileptic seizures.  They are investigating his seizures with hopes that they will be able to suppress them in the future, but there is much fear and uncertainty of the damage that these seizures have already caused.  To have some control of the seizures and to ultimately be seizure free would be a gift. 


Heartbreaking struggles and the feeling of helplessness overwhelm Mom on a daily basis.  However, there are always reasons to celebrate his success and growth.  Despite the challenges Ben faces, he conquers each day and brings sunshine to those who know and love him.  Mom knows that Ben is in her life for so many reasons.  Ben’s journey has made his mom a stronger person, and has given her the firm belief to learn, read, educate yourselves, seek support and advocate for your child. 


Story by:  Leah Nahirnick


T.J's Story



Images Captured by Rhonda DeMone Photography


Meet TJ, a. strong little man who always keeps smiling despite everything that he has endured. When TJ was six months old, his parents knew something was wrong. While he wasn't progressing at all, his doctors tried to reassure them that all babies progress at different rates. But by the time TJ was 18 months old, he was developmentally only 6 months old, and after seeing a neurologist, they determined that he had cerebral palsy and a global delay. 


It was devastating for his parents to never hear their child speak, to never know how he is feeling, and to not hear him say the words "I love you."  And through this, they've learned to not take things for granted. They say that the most amazing thing through this has been seeing how children around him have grown more compassionate and curious to learn about children like TJ, and seeing people fall in love with his infectious laugh and handsome smile. His mom says, "I am inspired by just how strong a person is inside of his little body. Despite all the pain he has endured with multiple surgeries, he just keeps smiling. I swear, he even comes into the recovery room smiling!" 


TJ is very close to his best friend, his Grampie, who is the only person who hears what TJ is saying without even saying a word. They have a special bond that simply cannot be explained. 


His parents constantly worry about TJ and what his future holds, but they know that his brother and sister will advocate for him and love him. They hope that he will grow up being happy, healthy, and being accepted by others. TJ's mom sums up her feelings with this quote she often uses to describe her thoughts, "Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." 
And so far, TJ is proving to be the best teacher. 


Story by Jag Nagra