Hope For Amedeo
Donation protected
Let me introduce you to Amedeo. A sweet caring child who desperately wants to keep up with his siblings and friends, he loves chicken nuggets and pizza, playing Wii and has a life moto "that sharing is caring." I wish this is all I had to write but I would not be here if that was the case. He is in desperate need of help.
Here is his story:
Amedeo was born 3/31/14 with a uncomplicated labor and delivery. Amedeo hit most of his milestones on time except for feeding issues due to a submucous cleft palate and laryngeal cleft. His speech and walking were delayed.
After his 1st birthday he began having what we now know as drop seizures. Sadly, he also began to be unable to use his facial muscles. He could not smile, he could not cry (except for the sign of big alligator tears when he did) and this was just devastating.
To make matters worse he was diagnosed with autism by the age of two and starting attending a special needs school. His mother was alerted by the staff that they did not think the fact that he could not smile was "normal."
His mother was told by a doctor that he did not smile because he was autistic. She felt unsettled with that answer and continued to search for answers......
After being lead down many dead end roads Amedeo was tested further and it was found that he has: FSHD: Facioscapulohumeral muscular dystrophy (FSHD) is a disorder characterized by muscle weakness and wasting (atrophy). The disorder gets its name from muscles that are affected in the face (facio), around the shoulder blades (scapulo), and in the upper arms (humeral). Finally she had some answers....
THIS IS EVEN MORE DEVASTATING. FSHD is rare and rapidly progressive. At that point his doctors made a referral to The Make A Wish Foundation. This obviously is something no parent ever wants to do.
Amedeo requires a chest vest, cough assist and oral suctioning. He has scoliosis of the rib cage and his rib is moving left impeding his ability to breathe.
Feb 12th Amedeos mother met with a new doctor at the MDA (muscular dystrophy) clinic. He may need a "experimental surgery" to open his rib cage. He needs a a special breathing machine to help him breath (CPAP). Per his doctor if he gets this machine they may see improvements within six months.
SADLY....Amedeos mother has run into numerous obstacles getting any of the the things she needs to care for him and help ease his discomfort.
Even a BATH CHAIR was DENIED!!!
These are Amedeos immediate needs: Funds to visit a doctor in Baltimore that specializes in FSHD, A Bath Chair, a manual wheel chair, a handicap accessible vehicle and the list keeps growing.
Amedeos mother cares for her 4 other children and tries her best to keep a sense of normalcy for her family however, Amedeo is declining and without these needs being met his future is uncertain.
I started this campaign with a small goal to start in hopes that even the slightest contribution can add up to something big to help alleviate some stress from Amedeo and his family.
If you can find it in your heart to donate 100% of the funds will go to Amedeo and his mother.
To follow Amedeos journey you can go here: https://www.facebook.com/groups/503118700280703/
Here is his story:
Amedeo was born 3/31/14 with a uncomplicated labor and delivery. Amedeo hit most of his milestones on time except for feeding issues due to a submucous cleft palate and laryngeal cleft. His speech and walking were delayed.
After his 1st birthday he began having what we now know as drop seizures. Sadly, he also began to be unable to use his facial muscles. He could not smile, he could not cry (except for the sign of big alligator tears when he did) and this was just devastating.
To make matters worse he was diagnosed with autism by the age of two and starting attending a special needs school. His mother was alerted by the staff that they did not think the fact that he could not smile was "normal."
His mother was told by a doctor that he did not smile because he was autistic. She felt unsettled with that answer and continued to search for answers......
After being lead down many dead end roads Amedeo was tested further and it was found that he has: FSHD: Facioscapulohumeral muscular dystrophy (FSHD) is a disorder characterized by muscle weakness and wasting (atrophy). The disorder gets its name from muscles that are affected in the face (facio), around the shoulder blades (scapulo), and in the upper arms (humeral). Finally she had some answers....
THIS IS EVEN MORE DEVASTATING. FSHD is rare and rapidly progressive. At that point his doctors made a referral to The Make A Wish Foundation. This obviously is something no parent ever wants to do.
Amedeo requires a chest vest, cough assist and oral suctioning. He has scoliosis of the rib cage and his rib is moving left impeding his ability to breathe.
Feb 12th Amedeos mother met with a new doctor at the MDA (muscular dystrophy) clinic. He may need a "experimental surgery" to open his rib cage. He needs a a special breathing machine to help him breath (CPAP). Per his doctor if he gets this machine they may see improvements within six months.
SADLY....Amedeos mother has run into numerous obstacles getting any of the the things she needs to care for him and help ease his discomfort.
Even a BATH CHAIR was DENIED!!!
These are Amedeos immediate needs: Funds to visit a doctor in Baltimore that specializes in FSHD, A Bath Chair, a manual wheel chair, a handicap accessible vehicle and the list keeps growing.
Amedeos mother cares for her 4 other children and tries her best to keep a sense of normalcy for her family however, Amedeo is declining and without these needs being met his future is uncertain.
I started this campaign with a small goal to start in hopes that even the slightest contribution can add up to something big to help alleviate some stress from Amedeo and his family.
If you can find it in your heart to donate 100% of the funds will go to Amedeo and his mother.
To follow Amedeos journey you can go here: https://www.facebook.com/groups/503118700280703/
Organizer and beneficiary
Holly Long
Organizer
Alpharetta, GA
Krystal Fields
Beneficiary
