Help Cooper Get to Delaware
Donation protected
Cooper is 2 years old and was born with achondroplasia, the most common form of dwarfism. With his dwarfism comes many other medical challenges, one of which is hydrocephalus. His parents have taken him to a peds neurosurgeon at Primary Children's Hospital in Salt Lake City, Utah. This particular doctor does not have a lot of knowledge with dwarfism and hydrocephalus associated with dwarfism, and at this moment isn't willing to do anything to even look at the continuing growth of Cooper's already large head (56-59cm and growing), or to even do an MRI, CT or ultrasound to check for possible compression which can lead to hydrocephalus.
In July, Heather and Zane were given an amazing gift and were able to take Cooper to San Diego, Ca to attend the Little People of America National Conference. While at the conference, Cooper had the opportunity to see Dr Pauli, a geneticist who is on the medical advisory board with the LPA. Cooper also was able to be seen by Dr Danielpour, a pediatric neurosurgeon. While in with these doctors, Heather explained the many symptoms Cooper is having that point towards hydrocephalus and possible spinal compression. Symptoms include but are not limited to crying/screaming, inconsolable, vomiting episodes, falling, falling and hitting his head and passing out, lack of appetite. These two doctors were concerned given Cooper's symptoms and recommended a MRI be done upon returning from San Diego.
cooper had his MRI. Reports and images have been sent to Dr Pauli, Dr Danielpour, and Drs Mackenzie, Bober and Campbell at the Skeletal Dysplasia Clinic in Willmington, DE. This week, Dr Pai sent his findings and believes Cooper needs to be admitted into the hospital and have a temporary shunt placed, drain some fluid and check pressure. He believes Cooper's fluctuating intracranial pressure is causing Cooper a great deal of pain and believes Cooper is still a viable candidate for a VP Shunt.
The problem with this is his neurosurgeon in Salt Lake City doesn't believe there is anything to worry about and refuses to treat Cooper. That's where this fundraising effort comes into play. Because of the lack of treatment Cooper is unable to receive in Utah, his family has chosen to take Cooper to the Skeletal Dysplasia Clinic at A.I. du Pont Hospital in Willmongton, DE. They feel Cooper will get the best possible care and treatment there because they specialize in skeletal dysplasia.
If you are reading this, please share it! If you cannot donate, share it and say a prayer for Cooper. No child should have to live in constant pain like Cooper currently does.
Thank you!!!
In July, Heather and Zane were given an amazing gift and were able to take Cooper to San Diego, Ca to attend the Little People of America National Conference. While at the conference, Cooper had the opportunity to see Dr Pauli, a geneticist who is on the medical advisory board with the LPA. Cooper also was able to be seen by Dr Danielpour, a pediatric neurosurgeon. While in with these doctors, Heather explained the many symptoms Cooper is having that point towards hydrocephalus and possible spinal compression. Symptoms include but are not limited to crying/screaming, inconsolable, vomiting episodes, falling, falling and hitting his head and passing out, lack of appetite. These two doctors were concerned given Cooper's symptoms and recommended a MRI be done upon returning from San Diego.
cooper had his MRI. Reports and images have been sent to Dr Pauli, Dr Danielpour, and Drs Mackenzie, Bober and Campbell at the Skeletal Dysplasia Clinic in Willmington, DE. This week, Dr Pai sent his findings and believes Cooper needs to be admitted into the hospital and have a temporary shunt placed, drain some fluid and check pressure. He believes Cooper's fluctuating intracranial pressure is causing Cooper a great deal of pain and believes Cooper is still a viable candidate for a VP Shunt.
The problem with this is his neurosurgeon in Salt Lake City doesn't believe there is anything to worry about and refuses to treat Cooper. That's where this fundraising effort comes into play. Because of the lack of treatment Cooper is unable to receive in Utah, his family has chosen to take Cooper to the Skeletal Dysplasia Clinic at A.I. du Pont Hospital in Willmongton, DE. They feel Cooper will get the best possible care and treatment there because they specialize in skeletal dysplasia.
If you are reading this, please share it! If you cannot donate, share it and say a prayer for Cooper. No child should have to live in constant pain like Cooper currently does.
Thank you!!!
Organizer
Heather Young Vincent
Organizer
Gunnison, UT
