Emmett's Army
Donation protected
*****We recently increased the amount for sweet Emmett because costs to care for him keep increasing and the reality of the costs associated for end of life care have become very real. Thank you for reading...
For: A handsome little boy named Emmett
I met sweet, handsome, sparkly-eyed Emmett when his brother started to come to the same preschool our kids go to. His mom and I were able to have a playdate and I noticed she was picking him up to move him from place to place (he was 18 months old). We started talking and she said that he had been regressing developmentally since he was about 6 months old and they were in the process of having tests done. They spent ALL of 2017 searching for a diagnosis. They did over 60 tests…spent tens of thousands of dollars, tons of hospital stays, scans, blood draws, and still didn’t have answers.
On January 24th of this year, Joe and NIkki finally received a diagnosis: an incredibly rare autosomal recessive genetic disorder called Krabbe disease. It is a lysosomal storage disorder that leads to demyelination in the nervous system. It causes the complete loss of all nervous system functions. There is no cure and it is terminal...he has lost his sight and they say he will likely soon lose his hearing and cognitive functions. He cannot feed himself and has been on a feeding tube for six months. He has lost all function of his extremities. He is also at huge risk for infections and even a little cold could be catastrophic. Crying can also cause him huge pain and present more medical issues. Nikki is now carrying him all day and at night he sleeps with them because he is so scared (he just lost his sight and has no idea what is happening to him since he is only 2-can you even imagine?).
THE NEED:
Postural carseat: $1500
Monthly costs of medicines, supplements, therapies: varies
Funeral costs: $15,000
Travel to/from Pittsburgh: $6,000 every two months (main specialist in the US for Krabbe is there)
Bucket list items (varied costs):
-Go for a hike
-Have a first kiss
-Swim in a lake
-Ride a rollercoaster
-Ride a jet ski
-Go to a concert
-Visit the nations capitol
-Swim with dolphins, toes in sand, build sand castle
-Sit on Santa's lap
-Fly a kite
-Have a picnic in Central Park, visit NYC
-Ride a carousel
-Splash in a puddle
I write this in tears because if any of you are parents (or just plain human) this is an impossible thing to imagine seeing anyone go through let alone a sparkly eyed, little baby boy who should be running around and in the prime of his life.
Please consider blessing this family with ANY amount you can generously give. If you are one who believes in prayer I know they would greatly covet your prayers for a miracle and for endurance and grace. Let us help this family!
Love, Anna Norman
*They also have a four year old boy named Jaxon and every time they come home from the hospital or doctor he asks “is he healed now? Can he come play with me?” Can you even imagine...
Here is a link to a video helping explain the disease: https://www.youtube.com/watch?v=-73qE2mHYWY&sns=em
For: A handsome little boy named Emmett
I met sweet, handsome, sparkly-eyed Emmett when his brother started to come to the same preschool our kids go to. His mom and I were able to have a playdate and I noticed she was picking him up to move him from place to place (he was 18 months old). We started talking and she said that he had been regressing developmentally since he was about 6 months old and they were in the process of having tests done. They spent ALL of 2017 searching for a diagnosis. They did over 60 tests…spent tens of thousands of dollars, tons of hospital stays, scans, blood draws, and still didn’t have answers.
On January 24th of this year, Joe and NIkki finally received a diagnosis: an incredibly rare autosomal recessive genetic disorder called Krabbe disease. It is a lysosomal storage disorder that leads to demyelination in the nervous system. It causes the complete loss of all nervous system functions. There is no cure and it is terminal...he has lost his sight and they say he will likely soon lose his hearing and cognitive functions. He cannot feed himself and has been on a feeding tube for six months. He has lost all function of his extremities. He is also at huge risk for infections and even a little cold could be catastrophic. Crying can also cause him huge pain and present more medical issues. Nikki is now carrying him all day and at night he sleeps with them because he is so scared (he just lost his sight and has no idea what is happening to him since he is only 2-can you even imagine?).
THE NEED:
Postural carseat: $1500
Monthly costs of medicines, supplements, therapies: varies
Funeral costs: $15,000
Travel to/from Pittsburgh: $6,000 every two months (main specialist in the US for Krabbe is there)
Bucket list items (varied costs):
-Go for a hike
-Have a first kiss
-Swim in a lake
-Ride a rollercoaster
-Ride a jet ski
-Go to a concert
-Visit the nations capitol
-Swim with dolphins, toes in sand, build sand castle
-Sit on Santa's lap
-Fly a kite
-Have a picnic in Central Park, visit NYC
-Ride a carousel
-Splash in a puddle
I write this in tears because if any of you are parents (or just plain human) this is an impossible thing to imagine seeing anyone go through let alone a sparkly eyed, little baby boy who should be running around and in the prime of his life.
Please consider blessing this family with ANY amount you can generously give. If you are one who believes in prayer I know they would greatly covet your prayers for a miracle and for endurance and grace. Let us help this family!
Love, Anna Norman
*They also have a four year old boy named Jaxon and every time they come home from the hospital or doctor he asks “is he healed now? Can he come play with me?” Can you even imagine...
Here is a link to a video helping explain the disease: https://www.youtube.com/watch?v=-73qE2mHYWY&sns=em
Organizer and beneficiary
Anna and Matt Norman
Organizer
Beaverton, OR
Joseph Monaco
Beneficiary
