Medical expenses for Hunter Van Ells
Donation protected
Our precious Hunter was born on March 24, 2018 with a very rare condition called Rhizomelic Chondrodysplasia Punctata (RCDP).
Most children with RCDP don’t make it to age 2, and any older than 5 are considered long term survivors. This disorder is so rare, less than 100 children worldwide have it.
Some of the characteristics of RCDP are
• Shortening of the humerus and femur
• Coronal clefts of the vertebral bodies
• Cataracts
• Lower than normal birth weight, length, and head circumference
• A growth deficiency
• Mental deficiency
• Seizures
• Calcium deposits at the joints
• Stiff, painful joints (this is not true for every child)
• Recurrent respiratory tract infections
• Aspiration
• Some children with RCDP have heart complications as well
• Some children with RCDP also have hearing loss
Sadly, Hunter has most of these characteristics which result in many appointments with specialists, which are all about 3 hours from home.
Hunter needs glasses to see, and is completely dependent on his G-tube for food. He gets lots of physical and occupational therapy every week to help strengthen his muscles and relax his stiff joints.
Despite what Hunter goes through he is always such a happy boy and we are so thankful he is in our lives.
Any money raised is being used to help pay for upcoming appointments or medical supplies not covered by insurance.
Most children with RCDP don’t make it to age 2, and any older than 5 are considered long term survivors. This disorder is so rare, less than 100 children worldwide have it.
Some of the characteristics of RCDP are
• Shortening of the humerus and femur
• Coronal clefts of the vertebral bodies
• Cataracts
• Lower than normal birth weight, length, and head circumference
• A growth deficiency
• Mental deficiency
• Seizures
• Calcium deposits at the joints
• Stiff, painful joints (this is not true for every child)
• Recurrent respiratory tract infections
• Aspiration
• Some children with RCDP have heart complications as well
• Some children with RCDP also have hearing loss
Sadly, Hunter has most of these characteristics which result in many appointments with specialists, which are all about 3 hours from home.
Hunter needs glasses to see, and is completely dependent on his G-tube for food. He gets lots of physical and occupational therapy every week to help strengthen his muscles and relax his stiff joints.
Despite what Hunter goes through he is always such a happy boy and we are so thankful he is in our lives.
Any money raised is being used to help pay for upcoming appointments or medical supplies not covered by insurance.
Organizer and beneficiary
Ashlee Van Ells
Organizer
Derbys Corners, NY
John Van Ells
Beneficiary
