Emma's wheelchair accessible van

My Granddaughter Emma's story:

The weekend of January 27th, 2006 was the start of Emma’s miraculous story. As with all stories, however, it begins with tragedy. At the time, Emma was 23 months old and she and her mother lived with mom's parents in a split-level ranch house. Emma was a delightful toddler who smiled from the time she opened her eyes in the morning until she closed them at night. One evening after dinner, she was heading up the stairs to the main level. After making it to the foyer landing, she began ascending the final 6 steps. When she was almost to the top, she fell backward down the stairs and landed on the foyer. Her mother rushed down to her, picked her up, and like any first-time nervous mother, gave her the once over. For the next few days, Emma acted the same except for one detail. She refused to walk. She insisted upon being carried everywhere she went. Her appetite was normal, she wasn’t vomiting or saying her tummy hurt, and her vision seemed perfect. But she just did not want to walk. And then four days later on January 30th, 2006, THE big fall happened.

That Monday evening after dinner, her mother was getting Emma ready for bed. Emma was sitting on a twin size bed that sat in the same room her crib was in. After putting her in her pajamas, mom turned her back  to get something out of the dresser. The next thing she knew she heard a loud thud. Turning around she was expecting to see Emma banging on the wall.
 Mom noticed she was not on the bed anymore. Instead, she was laying lifeless and still on the floor.   Her mother immediately screamed for  grandma to call “911”, scooped her up and ran her to the kitchen and placed her on the counter. Some of  mother's CPR training as a lifeguard kicked in and she began to give her rescue breaths. The next few moments were a blur, but it wasn’t too long before a Greece police officer arrived and took over while mom and grandparents backed into the corner and dissolved into hysteria.

The ambulance rushed Emma to Strong Hospital. Over the next few days, family remember nurses and doctors telling them she wasn’t out of the woods and, that she might not make it home,  Emma had sustained a contusion ( bruise) high on her spinal cord. She is one of a few children in this country with this type of injury. She was on a ventilator, and all kinds of tubes and wires were attached to her tiny body. One day, after about a week or two in the Pediatric Intensive Care Unit,  the attending physician and social worker took the family  into an empty patient room and told them that to the best of their knowledge and experience, Emma would never, walk, breathe, talk, or eat again on her own. She would always need the ventilator, and she would never move anything below her neck again. They said her family  would have to take her to a rehabilitation facility so they could be taught how to care for her for the remainder of her life.  Or, they could just "put her away in a hospital and visit on weekends".

Mom and grandparents  spent several more weeks at Strong Hospital, and every day, they saw more and more glimmers of hope from Emma. First it was a flick of her right wrist. Then, when they would blow bubbles near her, she would purposefully reach for the bubbles with her right hand,. Just  before they left for rehab, she started to breathe over the ventilator. One thing remained constant- her smile never left or faded. Only two rehabs across the country would take Emma because of her severe medical condition. Her mother chose Baltimore which turned out to be a gift from God!

At the end of March, her parents made their  way to Kennedy Krieger Institute in Baltimore, MD. There, they  were greeted by Dr. McDonald (the physician who treated and cared for Christopher Reeve) and his amazing team. When they sat down with them that first day and explained what they had been told at Strong Hospital about her prognosis, they all but laughed at the family. . Dr. McDonald stated up front that he fully expected that she would walk again someday and be off the ventilator! This sounded too good to be true…. still there was hope.

Over the next 17 weeks, Emma went through 4-6 hours of intense physical and occupational therapy, 1-2 hours of speech therapy, and 2 hours of respiratory therapy 5 days a week. By the time everyone came home, she was off the ventilator about 4-6 hours every day, she could sit up on her own, she was riding a modified tricycle with help, and she could take a few steps in a modified walker. In only 17 weeks!

Their return to Rochester required a stop off at Strong Hospital before taking her home. When the doctors, nurses, and therapists saw how much progress she had made, they were speechless. But that’s been our Emma- she’s been a fighter and strong since the day she was born. And don’t forget- she smiled through it all!

The therapy continued at home and slowly, but surely, the improvements keep coming. Family were able to acquire a motorized wheelchair as her main mode of transport, but the walking has always been, and still is, everyones' goal. Mom had reconnected with an old friend, that friendship turned into love and a wedding was planned.  Emma was beyond thrilled as she had never had a father, Her biological father chose not to remain as a family, so Emmas mother struggled long and hard as a single parent. She went to school to get her RN so she could care for children like Emma.

So at their wedding, Emma stunned all of the family and friends when she walked down the aisle with her walker- all by herself! There wasn’t a dry eye in the room. She had a special walker, her paternal grandmother walked beside her in case she fell.  You could hear a pin drop in the church.  The only sound anyone could hear was the sound of Emma gulping air through her trach.  Her face was red with determination and it took every bit of strength she could pull together to pull herself down that aisle.  But she did it for her new father and it was an amazing thing to see.

Today, Emma has made AMAZING progress! She only uses the ventilator for 10 hours at night, walks 500 feet in her walker at school, eats regular food like any other 10 year old, and attends 5th grade at French Road Elementary in Brighton, NY. Emma is our miracle and inspiration! And through it all- her smile is still as bright and cheerful as it always has been!

Which brings us to the need for a GoFund me page, Emma requires a wheelchair accessible van and my kids are in need of a new one and unable to financially afford it.. Your donation will help assist  getting a van and putting in accomodations for her wheel chair.  I am Judi Nielsen, Emmas' maternal grandmother. My late husband and I adopted 18 children the system said nobody wanted. Emmas father was our last adoption.  The joy and love he brought to our family is beyond description.  He formally adopted Emma and is working to become a school teacher for special needs children while he holds down a full time job.   He works hard with Emma on her daily PT and exercises. Her mother is a nurse working many jobs to help the family.  We need help to keep our precious Emma with her indomitable spirit on the go just like other little girls her age.  Your support is truly appreciated.
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Organizer

Judith Nielsen 
Organizer
Victor, NY
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