Sweet Ellie
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Ellie's (MaryEllen) story-
Ellie was born without complications and was an easy baby from birth. Ellie would smile easily, giggle and be a normal baby for mom and dad. Eating her vegetables, learning to crawl, sitting, standing, walking, using the potty chair, and blowing kisses as well as her baby talk all came natural to her.
She did her first Easter egg hunt and met the Easter bunny on Sunday, March 24, 2018. She loved the Easter bunny and walked around picking up colorful plastic eggs and eating raw carrots that the Bunny's helpers had set out for children. She went down the slide with help and was practicing climbing the steps with help.
On April 2, 2018 her school daycare told her mom when she was picked up that day that her left leg was "bowed" (hyper-extended) and she seemed to be dragging her left foot. Ellie saw her pediatrician on Wednesday April 4th and they wanted either a neurologist or orthopedist to take a look at her. She saw a neurologist on Monday April 9th and she did not think it was a neurological problem, so she squeezed her into the orthopedist that day. The orthopedist took an x-ray of her knee and didn't see anything and told them to come back in a week. On Wednesday April 18th, Ellie went back to a different orthopedist at that office and they said that it was probably nothing. That Ellie should come back in 6 months if she still wasn’t walking and there was no reason to waste money on PT.
Ellie's parents were not satisfied with waiting 6 months and definitely thought PT would help. At this point Ellie was only walking when assisted. On Friday, April 20th, Jill took Ellie to her pediatrician and asked to get a CBC done. They also did blood work for inflammatory markers. All the blood work came back normal. On Sunday April 22, Their neighbor Cindy who is a pediatric PT professor at MUSC came over to evaluate Ellie. She definitely said not to wait 6 months. She may have felt some clonus in Ellie's left foot. Ellie was 17 months old.
On Tuesday, April 24th, Jill and Chris called Shriners in Greenville, SC and explained Ellie's situation. Shriners called back the next day and said they would see Ellie on Friday, April 27th. Shriners did more x-rays of Ellie's spine and full right and left leg. All looked ok. They also did another CBC and lead test as well as additional bloodwork. They ordered an MRI of the brain, upper back, lumbar, etc... By the end of April, Ellie was no longer walking, standing or crawling. On May 1st Ellie started PT. On May 3rd was Ellie's MRI under general anesthesia.
On May 4, 2018 at 8:30am, Shriners called and said there were spots on Ellie's brain. Chris, Jill and Ellie's lives were changed forever. Later that afternoon the neurologist from MUSC called and they heard the term Leukodystrophy for the first time. They are waiting on the blood work from the geneticist to determine which type of leukodystrophy Ellie has.
On May 14th, Ellie was fitted with braces so that she might be able to stand or maybe walk again. Ellie is also having a difficult time sitting up now. Chris, Jill and Ellie are now waiting on genetic results so they can see the best Leuko doctor in the United States at Children's Hospital of Philadelphia. They are possibly going to CHOP on June 14th, but may have to push it back to wait for the many genetic test results that they have yet to receive. This is so frustrating and sad for all as Ellie is also having symptoms in her hands and it is getting harder for her to hold her drinking cup. Ellie does not sleep well since she cannot rollover or change positions which means her mom and dad do not sleep well either. At this point there is no known cure for this disease. The possibility of Ellie continuing to regress and having a shorter life expectancy is a real possibility. This is so devastating to Chris, Jill and everyone who loves this wonderful little girl.
Ellie no longer goes to her school/daycare since it is so important for her to not get an illness with a high fever. Jill is no longer working full time hours as a dental hygienist since there are many doctor appointments and Ellie needs extra care at this time. Jill continues to work at Ravenel Family Dentistry part time and Chris continues his HVAC business. They have insurance , however there are many things that are not covered and both have missed and will continue to miss time from work as well as working fewer hours. They want the best there is for Ellie and are doing their best to do that and stop the progression of the disease.
Ellie was born without complications and was an easy baby from birth. Ellie would smile easily, giggle and be a normal baby for mom and dad. Eating her vegetables, learning to crawl, sitting, standing, walking, using the potty chair, and blowing kisses as well as her baby talk all came natural to her.
She did her first Easter egg hunt and met the Easter bunny on Sunday, March 24, 2018. She loved the Easter bunny and walked around picking up colorful plastic eggs and eating raw carrots that the Bunny's helpers had set out for children. She went down the slide with help and was practicing climbing the steps with help.
On April 2, 2018 her school daycare told her mom when she was picked up that day that her left leg was "bowed" (hyper-extended) and she seemed to be dragging her left foot. Ellie saw her pediatrician on Wednesday April 4th and they wanted either a neurologist or orthopedist to take a look at her. She saw a neurologist on Monday April 9th and she did not think it was a neurological problem, so she squeezed her into the orthopedist that day. The orthopedist took an x-ray of her knee and didn't see anything and told them to come back in a week. On Wednesday April 18th, Ellie went back to a different orthopedist at that office and they said that it was probably nothing. That Ellie should come back in 6 months if she still wasn’t walking and there was no reason to waste money on PT.
Ellie's parents were not satisfied with waiting 6 months and definitely thought PT would help. At this point Ellie was only walking when assisted. On Friday, April 20th, Jill took Ellie to her pediatrician and asked to get a CBC done. They also did blood work for inflammatory markers. All the blood work came back normal. On Sunday April 22, Their neighbor Cindy who is a pediatric PT professor at MUSC came over to evaluate Ellie. She definitely said not to wait 6 months. She may have felt some clonus in Ellie's left foot. Ellie was 17 months old.
On Tuesday, April 24th, Jill and Chris called Shriners in Greenville, SC and explained Ellie's situation. Shriners called back the next day and said they would see Ellie on Friday, April 27th. Shriners did more x-rays of Ellie's spine and full right and left leg. All looked ok. They also did another CBC and lead test as well as additional bloodwork. They ordered an MRI of the brain, upper back, lumbar, etc... By the end of April, Ellie was no longer walking, standing or crawling. On May 1st Ellie started PT. On May 3rd was Ellie's MRI under general anesthesia.
On May 4, 2018 at 8:30am, Shriners called and said there were spots on Ellie's brain. Chris, Jill and Ellie's lives were changed forever. Later that afternoon the neurologist from MUSC called and they heard the term Leukodystrophy for the first time. They are waiting on the blood work from the geneticist to determine which type of leukodystrophy Ellie has.
On May 14th, Ellie was fitted with braces so that she might be able to stand or maybe walk again. Ellie is also having a difficult time sitting up now. Chris, Jill and Ellie are now waiting on genetic results so they can see the best Leuko doctor in the United States at Children's Hospital of Philadelphia. They are possibly going to CHOP on June 14th, but may have to push it back to wait for the many genetic test results that they have yet to receive. This is so frustrating and sad for all as Ellie is also having symptoms in her hands and it is getting harder for her to hold her drinking cup. Ellie does not sleep well since she cannot rollover or change positions which means her mom and dad do not sleep well either. At this point there is no known cure for this disease. The possibility of Ellie continuing to regress and having a shorter life expectancy is a real possibility. This is so devastating to Chris, Jill and everyone who loves this wonderful little girl.
Ellie no longer goes to her school/daycare since it is so important for her to not get an illness with a high fever. Jill is no longer working full time hours as a dental hygienist since there are many doctor appointments and Ellie needs extra care at this time. Jill continues to work at Ravenel Family Dentistry part time and Chris continues his HVAC business. They have insurance , however there are many things that are not covered and both have missed and will continue to miss time from work as well as working fewer hours. They want the best there is for Ellie and are doing their best to do that and stop the progression of the disease.
Organizer and beneficiary
Kerri Gardner Gray
Organizer
Fountain Inn, SC
Jill Wilson
Beneficiary