Cure for Connor- MPS II
Donation protected
On January 6, 2017, Connor was diagnosed with a rare genetic disorder called Mucopolysaccharidosis type II (MPS2), more commonly known as Hunter Syndrome.
His body is deficient in producing a certain enzyme that breaks down complex sugars and as a result, causes those sugars to deposit themselves onto tissue. Over time, these deposits begin to harden the tissue and can cause carpal tunnel, joint stiffness, respiratory issues, cardiovascular issues, mental retardation, and ultimately death.
There is no cure but there is a treatment, the second most expensive medicine on the market, Elaprase. Connor receives a weekly synthetic enzyme replacement that is given in 3-4 hour IV infusions. The enzymes break down those complex sugar deposits to help alleviate the tissue hardening and increase mobility. The reason it's so expensive is because of the rarity of the disease. There are only 2,000 cases in the world, 500 in the US. It affects mostly boys, and happens in approximately 1 in 150,000 male births.
All donations will help offset the cost of travel, parking, medical treatments, and therapies Connor may need. Any unused funds will be donated to the MPS society.
For more information please visit
http://mpssociety.org/donor-pages/
His body is deficient in producing a certain enzyme that breaks down complex sugars and as a result, causes those sugars to deposit themselves onto tissue. Over time, these deposits begin to harden the tissue and can cause carpal tunnel, joint stiffness, respiratory issues, cardiovascular issues, mental retardation, and ultimately death.
There is no cure but there is a treatment, the second most expensive medicine on the market, Elaprase. Connor receives a weekly synthetic enzyme replacement that is given in 3-4 hour IV infusions. The enzymes break down those complex sugar deposits to help alleviate the tissue hardening and increase mobility. The reason it's so expensive is because of the rarity of the disease. There are only 2,000 cases in the world, 500 in the US. It affects mostly boys, and happens in approximately 1 in 150,000 male births.
All donations will help offset the cost of travel, parking, medical treatments, and therapies Connor may need. Any unused funds will be donated to the MPS society.
For more information please visit
http://mpssociety.org/donor-pages/
Organizer
Ashly Robert Wiebelt
Organizer
Atascocita, TX
