Prayin4Aydyn - Our CVID Hero
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Hi I am Aydyn. Since birth my Mommy & Daddy have been tiressly taking care of me. I have been sick most of my life and have to endure constant trips to the Dr, Hospital, and Specialist. In August of this year my Mommy & Daddy started demanding answers. They were tired of being told "It's just a viral infection" or "Its just a bacterial infection" . At the end of September I got RSV for the 5th time since birth. God was on my side when they took pictures of my lungs because a very special Radiology Angel found that my liver was enlarged. All my bloodwork looked good so the Dr.'s told my parents it was just another Viral infection. My pediatrician was upset as well and agreed that we find out what is going on. A few days after prooving my liver was really big I got a 105.5 fever and my pediatrician demanded I go to Arnold Palmer to figure out what was going on. They told my mommy and daddy it was probably viral. My mommy spoke up and said NO I am tired of everyone saying its viral and enough is enough. That night they prepped me for a CT Scan and a poke in the arm. I cried but I did it. They immeadiately admitted me to the childrens hospital to begin testing. After 4 long days I was released to go home and was told I tested positive for the EBV (Epstein Barr Virus) Antibody. They also found that my bowels were decended and I had a mild blockage. (4th one I have had since birth) . We were told to follow up with all our specialists and added an Infectious Disease Specialist to my list. We seen her exactly one week after I got out of Arnold Palmer. She was so very nice. She ordered alot of blood work for me. I wasn't scared as I have had a lot of needles since I was born. It's harder for my Mommy than it is me to be honest. I got the blood work done like a Hero my parents say I am. Today 11/09/2015 my Infectious Disease Dr. Told me I am now apart of the Zebra club for CVID. I didn't understand so Mommy asked a bunch of questions and this is what it means in a nutshell.
11/09/2015 - Mommy Here. Here is Aydyn's complete diagnosis as of today.
We are still waiting for 1 test to come back but in the tests that did return they found 2 different issues that are seriously contributing to Aydyns health. First - Aydyn was diagnosed with Mannose Binding Lectin Deficiency - In short Aydyns immune systems has the inability to fight off reoccurring Bacteria Illness's, Viral Illness's, & Live Vaccine inducements. Second - Each child is given Prevnar 13 Vaccines (a total of 3) to prevent Pnueomonia Last year Aydyn got Pnueominia and when he was 1.5. They additionally gave him pneumococcal polysaccharide vaccine (PPSV23) . Vaccines are made up of 2 binding properties. Proteins and Carbohydrates (no not the kind we eat) . Aydyns testing to ensure he is protected showed that he has the inability to process and build immunity to the Protein binding properties of vaccines. Mannose Binding Lectin Deficiency itself has a 5% rate world wide and she advised that its super rare to have a protein binding rejection making the representing that Aydyn is now .005 % worldwide for his disease. We will see her in 2 weeks for additional follow up on more blood work ordered today ( further depth and mutation diagnosis of the MB12 gene mutation) and Aydyn will require daily antibiotics very long term if not life long. She advised that with his EBV Antibody, Gastro issues, Asthma Issues major diseases can be very harmful and potentially fatal and he will not qualify for live vaccines. A change of life will have to happen as we have to control as much of his bacterial environment as possible and world travel and state to state travel will have to be researched etc & approved with proper medications to protect him.
We are reaching out to our friends and family to help raise Money for Aydyn. Due to the circumstances his past medical issues have caused us to miss a bunch of work and has required travel. This has put us in a tight financial spot. Due to the diagnosis Aydyn Hospital visits will continue, tests will continue, and time off for Mommy and Daddy will continue. They are going to work hard at keeping me healthy but the inevitable will happen. To date Aydyn has been hospitalized 9 times, has had 41 rounds of antibiotics (that's just for severe illnesses, and many visits to Orlando for specialists as where we live only offers minimal specialist options) .
We Thank each and everyone of you who has prayed for Aydyn and who has followed Aydyn. Anyone who knows him knows he's a true super hero. He's Kind, Loving, and through it all has kept a smile on his heavenly face.
Our pride has put us in a financial bind and we just ask anyone who can to please donate to Aydyns future appointments, Co-Pays, Hospital Visits, & Procedures. He has been given a life long sentence of illness. We need all the support we can get. Thank you everyone and God Bless.
We will also be working at raising awareness for CVID. It's a broad spectrum illness with many variations and mutations making it impossible to find a cure. We all know that finding cures for pediatric illness is hard but one with so many variations is even harder. The Zebra is Aydyn's new vision. Please contact Aydyn's mommy for information or awareness efforts for CVID.
11/09/2015 - Mommy Here. Here is Aydyn's complete diagnosis as of today.
We are still waiting for 1 test to come back but in the tests that did return they found 2 different issues that are seriously contributing to Aydyns health. First - Aydyn was diagnosed with Mannose Binding Lectin Deficiency - In short Aydyns immune systems has the inability to fight off reoccurring Bacteria Illness's, Viral Illness's, & Live Vaccine inducements. Second - Each child is given Prevnar 13 Vaccines (a total of 3) to prevent Pnueomonia Last year Aydyn got Pnueominia and when he was 1.5. They additionally gave him pneumococcal polysaccharide vaccine (PPSV23) . Vaccines are made up of 2 binding properties. Proteins and Carbohydrates (no not the kind we eat) . Aydyns testing to ensure he is protected showed that he has the inability to process and build immunity to the Protein binding properties of vaccines. Mannose Binding Lectin Deficiency itself has a 5% rate world wide and she advised that its super rare to have a protein binding rejection making the representing that Aydyn is now .005 % worldwide for his disease. We will see her in 2 weeks for additional follow up on more blood work ordered today ( further depth and mutation diagnosis of the MB12 gene mutation) and Aydyn will require daily antibiotics very long term if not life long. She advised that with his EBV Antibody, Gastro issues, Asthma Issues major diseases can be very harmful and potentially fatal and he will not qualify for live vaccines. A change of life will have to happen as we have to control as much of his bacterial environment as possible and world travel and state to state travel will have to be researched etc & approved with proper medications to protect him.
We are reaching out to our friends and family to help raise Money for Aydyn. Due to the circumstances his past medical issues have caused us to miss a bunch of work and has required travel. This has put us in a tight financial spot. Due to the diagnosis Aydyn Hospital visits will continue, tests will continue, and time off for Mommy and Daddy will continue. They are going to work hard at keeping me healthy but the inevitable will happen. To date Aydyn has been hospitalized 9 times, has had 41 rounds of antibiotics (that's just for severe illnesses, and many visits to Orlando for specialists as where we live only offers minimal specialist options) .
We Thank each and everyone of you who has prayed for Aydyn and who has followed Aydyn. Anyone who knows him knows he's a true super hero. He's Kind, Loving, and through it all has kept a smile on his heavenly face.
Our pride has put us in a financial bind and we just ask anyone who can to please donate to Aydyns future appointments, Co-Pays, Hospital Visits, & Procedures. He has been given a life long sentence of illness. We need all the support we can get. Thank you everyone and God Bless.
We will also be working at raising awareness for CVID. It's a broad spectrum illness with many variations and mutations making it impossible to find a cure. We all know that finding cures for pediatric illness is hard but one with so many variations is even harder. The Zebra is Aydyn's new vision. Please contact Aydyn's mommy for information or awareness efforts for CVID.
Organizer
Andrea Cannizzaro
Organizer
Melbourne, FL
