Rochester, NY Family Photographer | Last year, I met this sweet little baby girl named Evie for my Down Syndrome Awareness sessions. She was adorable and smiley and a happy go lucky little girl. A few months later, her family booked me for a full family session. It was wonderful to meet everyone–the family with three little girls, completely the opposite of my own with three boys! I learned that in addition to Evie, their littlest, who has Down Syndrome, their oldest daughter, Maddie, has autism. She also has Epilepsy and a rare genetic condition called 15q Overgrowth Syndrome.  Along with Maddie and Evie, sandwiched in between is adorable little Sadie, who is a little chatterbox and full of personality. Taking their pictures is a joy–I love to be able to deliver images that help Danielle and Jon smile and temporarily forget the daily challenges that they face raising two children with special needs while also cherishing and celebrating the fact that they do have three little miracles in their lives every day.

We just did a mini session for the family last week to celebrate something amazing and the family is so incredibly thankful…

Maddie’s mom just started a Mighty Cause a few months ago for Maddie’s special needs called Four Paws for Maddie’s Cause. Here are some words from Maddie’s mom:

My daughter Maddie is a six year old girl who just wants to be like her friends, like her sister, like every other kid out there. In order to keep Maddie safe though, she cannot be treated like any other kid. Maddie has Autism. Maddie has Epilepsy. Maddie has a rare genetic condition, 15q Overgrowth Syndrome. This means many things for Maddie. She doesn’t know that strangers can be dangerous. She doesn’t know that cars can be dangerous. She doesn’t know that if she runs away from her caretaker in a crowd she may never be seen again. Maddie just wants to “…walk like a big girl, like Sadie (her younger sister),” but doesn’t realize that when she runs away she could be hit by any number of cars or have detrimental falls. When in public Maddie rides around in a wheelchair with a five-point-harness to keep her safely secured. 

A service dog can help Maddie be a little bit more ‘normal.’ This dog can provide a very specific solution to Maddie’s elopement behavior–tethering. A special harness is utilized by the service dog and the handler, a belt is placed around Maddie’s waist and then attached to a harness that the dog wears. Maddie is given a ‘fake’ leash and the handler has the true leash. Maddie is taught that she is responsible for keeping the animal safe and she needs to make safe choices to do this. Maddie won’t be able to run away while tethered to the dog, it will act as an anchor. The dog will gently lead Maddie throughout the store, the airport, the library, wherever we are in the community that day. This will allow Maddie to appear more like a typical child, she’ll be able to walk with her sister in a store and not be confined to her wheelchair whenever we are out of the house. 

There are many differences between an autistic child and a neurotypical one. As a parent, I find that one of the most terrifying differences is the complete lack of safety awareness. In addition to the tethering, Maddie’s service dog can be taught how to track her. This would be extremely helpful if she ever got out of the house or away from us in public. The animal would be able to follow her scent until she was located. 

Maddie had her first seizure when she was three. She stopped breathing, we called an ambulance, we ended up in the hospital overnight. Maddie had her second seizure two years later at our local YMCA. It lasted 17 minutes this time; it was another trip in an ambulance and another overnight hospital stay. Maddie’s third seizure was at local park, that time it was a car ride and an Emergency Room visit. Her most recent seizure was treated at home. We were caught off guard by every seizure.  While a service dog won’t be able to prevent seizures, the animal would be trained to give us advanced warning  of an oncoming seizure. This dog could help us predict when a seizure is coming and allow us to get to a safe, quiet space for it to occur. 

We have made many changes to our house so that Maddie can be a happy, safe, productive member of our family. We worked with the state of New York to help us get funding for a fence around our backyard because we finally had to stop going out to play after Maddie made it up the street twice with no shoes on (once with no pants) after playing in the backyard. We put special locks on the top of all of our doors leading outside. Maddie eventually learned how to climb on a chair to open the locks so we now have keypads with changing codes on the inside of all of our doors so she cannot get out. We had child safety locks on the fridge as Maddie likes to play in food. Maddie figured out how to open the locks so we had to upgrade to key locks on the fridge and freezer. We have no furniture in our living room so that Maddie and her sisters have more room to run around in, we have a trampoline in the family room so Maddie can jump on that instead of the couches. We have installed a swing and a crash pad in our basement to help Maddie with some of her sensory needs. We have also worked with New York State to get Maddie a containment bed in her room so that she won’t try to get out at night. All of this is to say we have tried everything. The service dog we are striving for costs between $40,000 and $60,000 to house and train throughout it’s life before we welcome it into our home. Through grants and other benefactors the company is able to offer the dog to us as long as we can fundraise $17,000. We would like a service dog to keep Maddie safe and protect her from the many dangers of elopement in the community without having to confine her. We would like to be able to detect her seizures and protect her during them. We would like Maddie to feel a little more like her sisters and her friends.

The amazing part? Almost 200 people helped make Maddie’s service dog possible by donating $18,484!  I’m so thrilled for the family and share in their joy and thankfulness. Maddie is a sweet, sweet girl, and I’m excited to see how her life is changed for the better!

BETHANY CHASE PHOTOGRAPHY IS A TRUSTED AND EXPERIENCED PORTRAIT PHOTOGRAPHER IN ROCHESTER NY THAT CREATES CUSTOM NEWBORN PHOTOGRAPHY, MATERNITY PHOTOGRAPHY, BABY PHOTOGRAPHY, CHILD PHOTOGRAPHY AND FAMILY PHOTOGRAPHY EXPERIENCES FOR CLIENTS ALL ACROSS THE AREA. BETHANY CHASE PHOTOGRAPHY CURRENTLY SERVES, BUT IS NOT LIMITED TO THE FOLLOWING NEW YORK AREAS: ROCHESTER, WEBSTER, PENFIELD, PITTSFORD, BRIGHTON, PERINTON, FAIRPORT, HENRIETTA, SPENCERPORT, GATES, CHILI, IRONDEQUOIT, GREECE, CHURCHVILLE, MENDON.

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