Deagan's journey for a diagnosis
Donation protected
Most of you may know Deagan's story, for those who don't here is a bit about Deagan's journey being allergic to life. (Seriously.)
On October 12, 2014 my worst nightmare happened before my eyes. Deagan was 7 months old at the time. It still haunts me every night. Anaphylaxis almost took my baby boy's life. He is a fighter and fought for his life along side a great team of Doctors and nurses. The Hay River team ultimately saved his life by performing an emergency tracheostomy after many unsuccessful tries to intubate. Thankfully, the PICU team from Edmonton had came in time, as the tracheostomy blocked off by a blood clot. They were able to finally intubate and saved him, once again. God saved my baby boy. He was brought to the Stollery PICU. We didn't know if he would make it through the next day. We found out a while later he was allergic to the top 10 foods plus more. He currently has an allergy list of 25+ foods and medications etc. He has had numerous reactions including Anaphylaxis more than I can count. He is severely allergic to everything, he is considered "a bubble child". Deagan is very unpredictable and needs 24 hour care. His recent episode landed him in the PICU again in October. He needed 7 epinephrine injections and ended up on an epinephrine infusion for 10 days which no other child has been on before at the Stollery, due to Anaphylaxis. We have almost lost him many times since he was born on March 12, 2014.
{"Signs and symptoms of Mastocytosis and Mast Cell Activation Syndrome :
The signs (eg.skin spots, unusual lab test results, etc.) appear due to an over-abundance of mast cells either limited to the skin or internally, or both. The symptoms occur when mast cells are triggered to degranulate. Mast cell degranulation is a normal response of the immune system trying to protect the body. However, these disorders trigger mast cell activation (ie. degranulation) with or without apparent or valid trigger. Things such as foods and drinks, extreme temperatures in water or air, emotional and physical stress - these are only a few examples - can trigger mast cell degranulation for these patients. If the patient has both an over-abundance of mast cells, in addition to having excessively active mast cells (ie. degranulating when they should not), then the symptoms and illness become more severe, prolonged and life threatening. "}
As of today, Deagan has spent close to 15 months in the Stollery Children's Hospital in Edmonton, AB. He has been home a total of 3 weeks within this time ending up in the PICU upon return. All his Doctors are working very hard to try and diagnose him with no avail. We assume he has Mast Cell Activation Syndrome and Dysautonomia (a neurological disorder) but all the tests come back with a normal result or cannot be done on a child his age. We have exhausted all our resources here at the Stollery and in Canada. (We've contacted numerous hospitals in Canada and they have nothing more to offer to his complex case) It is frightening but we must find another Centre for Deagan to go to in order to be officially diagnosed and survive due to the complexity of his case. We are currently contacting the National Institute of Health and The Mayo Clinic as well as others in America and some places in other Countries. The medivac flight costs to another Centre and the hospital stay for someone is very expensive. We do not know all the details of what will be covered but it sounds like my (Deagan's mom) flight will be paid for but my accommodation and meals will not be covered. Deagan's dad (Kevin) who just recently learned the mine he works 2 weeks in, 2 out, in the NT will be closing. He will be getting laid off in the next couple months. Deagan's older brother, Kaelin, (4 years old ) must also be cared for while he and his mom are away while Kevin works or finds a new job ( or goes to school). If you are able to donate or even say a prayer for Deagan we would be so thankful! We are also hoping to raise awareness for other children who may have this and gone through this enormous struggle.
"It takes a community to raise a child." It has taken our Country to help Deagan so far. It really has... Without all the support from the Government of the Northwest Territories and Alberta, Deagan would not have survived.
It's been very hard and trying since Deagan was born. He has had many medical problems and allergies. We have had many ups and downs and had to temporarily relocate to Edmonton, AB. Hay River is all we knew, our home, with all our family and friends there. We couldn't have made it, without everyone helping in any way they could. Our hometown has been so amazing and generous, our family and friends have been by our sides through it all. We COULD NOT have made it this far without EVERYONE! The teams of Doctors, Nurses and all the other health care staff at the Stollery Childrens hospital in Edmonton have continuously been by our side through everything as well. All the wonderful people we have met along the way, it sure made a difference in our lives. We are so BLESSED. Thank you EVERYONE! ♡
On October 12, 2014 my worst nightmare happened before my eyes. Deagan was 7 months old at the time. It still haunts me every night. Anaphylaxis almost took my baby boy's life. He is a fighter and fought for his life along side a great team of Doctors and nurses. The Hay River team ultimately saved his life by performing an emergency tracheostomy after many unsuccessful tries to intubate. Thankfully, the PICU team from Edmonton had came in time, as the tracheostomy blocked off by a blood clot. They were able to finally intubate and saved him, once again. God saved my baby boy. He was brought to the Stollery PICU. We didn't know if he would make it through the next day. We found out a while later he was allergic to the top 10 foods plus more. He currently has an allergy list of 25+ foods and medications etc. He has had numerous reactions including Anaphylaxis more than I can count. He is severely allergic to everything, he is considered "a bubble child". Deagan is very unpredictable and needs 24 hour care. His recent episode landed him in the PICU again in October. He needed 7 epinephrine injections and ended up on an epinephrine infusion for 10 days which no other child has been on before at the Stollery, due to Anaphylaxis. We have almost lost him many times since he was born on March 12, 2014.
{"Signs and symptoms of Mastocytosis and Mast Cell Activation Syndrome :
The signs (eg.skin spots, unusual lab test results, etc.) appear due to an over-abundance of mast cells either limited to the skin or internally, or both. The symptoms occur when mast cells are triggered to degranulate. Mast cell degranulation is a normal response of the immune system trying to protect the body. However, these disorders trigger mast cell activation (ie. degranulation) with or without apparent or valid trigger. Things such as foods and drinks, extreme temperatures in water or air, emotional and physical stress - these are only a few examples - can trigger mast cell degranulation for these patients. If the patient has both an over-abundance of mast cells, in addition to having excessively active mast cells (ie. degranulating when they should not), then the symptoms and illness become more severe, prolonged and life threatening. "}
As of today, Deagan has spent close to 15 months in the Stollery Children's Hospital in Edmonton, AB. He has been home a total of 3 weeks within this time ending up in the PICU upon return. All his Doctors are working very hard to try and diagnose him with no avail. We assume he has Mast Cell Activation Syndrome and Dysautonomia (a neurological disorder) but all the tests come back with a normal result or cannot be done on a child his age. We have exhausted all our resources here at the Stollery and in Canada. (We've contacted numerous hospitals in Canada and they have nothing more to offer to his complex case) It is frightening but we must find another Centre for Deagan to go to in order to be officially diagnosed and survive due to the complexity of his case. We are currently contacting the National Institute of Health and The Mayo Clinic as well as others in America and some places in other Countries. The medivac flight costs to another Centre and the hospital stay for someone is very expensive. We do not know all the details of what will be covered but it sounds like my (Deagan's mom) flight will be paid for but my accommodation and meals will not be covered. Deagan's dad (Kevin) who just recently learned the mine he works 2 weeks in, 2 out, in the NT will be closing. He will be getting laid off in the next couple months. Deagan's older brother, Kaelin, (4 years old ) must also be cared for while he and his mom are away while Kevin works or finds a new job ( or goes to school). If you are able to donate or even say a prayer for Deagan we would be so thankful! We are also hoping to raise awareness for other children who may have this and gone through this enormous struggle.
"It takes a community to raise a child." It has taken our Country to help Deagan so far. It really has... Without all the support from the Government of the Northwest Territories and Alberta, Deagan would not have survived.
It's been very hard and trying since Deagan was born. He has had many medical problems and allergies. We have had many ups and downs and had to temporarily relocate to Edmonton, AB. Hay River is all we knew, our home, with all our family and friends there. We couldn't have made it, without everyone helping in any way they could. Our hometown has been so amazing and generous, our family and friends have been by our sides through it all. We COULD NOT have made it this far without EVERYONE! The teams of Doctors, Nurses and all the other health care staff at the Stollery Childrens hospital in Edmonton have continuously been by our side through everything as well. All the wonderful people we have met along the way, it sure made a difference in our lives. We are so BLESSED. Thank you EVERYONE! ♡
Organizer
Jennifer Tregidgo-Clavette
Organizer
Hay River, NT