Treatment for Tee-Cannon

On Friday November 10th, 2017 we were sitting in line for the valet parking at the New Orleans Children's Hospital on our way to see yet another doctor, a  cardiologist that Cannon had been referred to, when we got a call from the geneticist at New Orleans Children's Hospital. This phone call would instantly change our lives forever. One of the bloodtests had come back and it said that Cannon has Gaucher disease. The geneticist says it's type 2. 

A little background: Cannon was born 8 weeks before his due date and has had medical issues since day one. He spent 19 days in the NICU at Woman's Hospital developing outisde the womb. Right after he came home, he then underwent abdominal surgery to correct pyloric stenosis. At about 2 months he was back in the NICU for RSV, he has since had 3 more hospital stays in the PICU for RSV and other respiratory issues. At 6 months he was diagnosed by an ER doctor with splenomegaly and heptaomegaly, or enlarged spleen and liver. Since then we have been seeing a hematologist at St. Jude in Baton Rouge to monitor his ever decreasing platelets and ever enlarging spleen and liver. This has made it very hard for Cannon to develop properly and reach the same milestones as a healthy baby and he has been incredibly sick his entire life. He has been subjected to test after test including biweekly labs, CT scans, and ultrasounds with no real diagnosis.

Gaucher Disease is an ugly, very rare genetic disease in where the body does not have enough of an enzyme called glucocerebrosidase. This enzyme breaks down a fatty chemical called glucocerebroside. Because the body cannot break down this chemical, fat-laden Gaucher cells build up in organs like the spleen, liver, bone marrow, heart, eyes, and central nervous system. There are 3 types of Gaucher. Type 1 symptoms include spleen and liver enlargement, low platelets, bone problems, and fatigue, but brain development is normal. Type 1 is treatable with enzyme replacement therapy and people can live somewhat normal lives, but it is fatal without treatment. Type 2 is terminal. It invloves severe, irreversible brain damage. Onset is fast and usually results in death before the age of 2. Type 3 has a more gradual onset than type 2 and people with type 3 may survive into adulthood with treatment. Type 3 symptoms include spleen and liver enlargement, low platelets, respiratory problems, bone problems, fatigue, seizures, eye movement disorders, and blood disorders. Type 3 is partially treatable with enzyme replacement therapy, but the replacement enzyme does not cross the "blood-brain" barrier. Therefore, enzyme replacement has little to no effect on the severe involvement of the central nervous system. 

While there is no doubt Cannon has Gaucher, we do not agree with the Gaucher type 2 diagnosis. Type 2 has a 100% mortality rate. It usually takes your child’s life by age 2 and in even rarer cases, by age 3. Cannon just does not have the neurological symptoms usually associated with type 2. We have fought feverishly to get our son help and have expended most of our resources.  Gaucher Disease is not common and type 2 is even more rare. An estimated 500 people currently have type 2 worldwide. This makes diagnosis and treatment very difficult. Gaucher is so rare that St. Jude, New Orleans Children's Hospital, and many other national children’s hospitals are unfamiliar with the disease. St. Jude told us, "some where out there, there is a child like yours and that we just have to find him”.  This further backs our opinion that it is not type 2. We have reached out to the Gaucher community and received great direction. We found children like ours. There are two doctors nationally that we are reaching out to  that are considered to be on  the leading edge of Gaucher treatment, research, and diagnosis. These two doctors are cosidered Gaucher Disease Specialist and can provide the diagnosis and treatment that Cannon so desperatley needs. One in is Fairfax Virginia and one is at Yale in Connecticut. We fully expect to travel to either Virgina or Connecticut or both to have him evaluated by a Gaucher specialist and receive treament. Cannon will require biweekly enzyme replacement therapy infusuions and possibly a bone marrow transplant. Enzyme replacement therapy currently cost $200,000 a year not including travel to treatment centers. He may also need blood transfusions, other prescriptions for bone pain and osteoporosis, bone surgery, and other unforseen hospitalizations and medical expenses. There is also research into stem cell transplantation to treat Gaucher disease.

The unexpected hospital bills, doctor's bills, travel, wages lost from taking extended periods off of work to care for Cannon, and a baby that is slowly dying before our eyes has left us emotionally and financially drained. We have kept Cannon’s illness mostly to oursleves, but are now making it public because we need your help. You can help us seek diagnosis and treament for Cannon by a Gaucher specialist by donating towards his medical needs. No donation is too small. Please share this page through social media and email to help us spread the word so we can see Cannon grow up and live a long, happy life. All funds will go towards Cannon's medical needs and care. We welcome all prayers and fully believe in the healing power of prayer. Please help us fight for Cannon and keep our family together.
https://www.gofundme.com/cannonvoorhies

We have had several requests for PayPal so we created a PayPal account for Cannon as well. paypal.me/CannonV








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Organizer

Candis Voorhies 
Organizer
New Roads, LA
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