Fall and winter have always been my favorite time of year. I love the cool weather, the holidays, the colors of the fall leaves, the white snowy trees, the traditions, the Christmas lights, the parades, tree lightings, the decorating, all the festivities, family all together and really everything about these seasons, as you can see. I never dreamed my favorite time of year would end up being so terrifying for us. Terrifying, you ask? YES terrifying!
As most of you know, along with Jude’s diagnosis (RCDP) comes severe respiratory issues. A common cold for others usually means chicken noodle soup, some medicine and cozy relaxation. A common cold for Jude…well that simply does not exist. Nothing about a cold for him is common. A cold almost always leads to a hospitalization. A cold, flu or any of these respiratory viruses are a VERY serious thing for Jude and all the RCDP babies.
When it comes to these battles, our reality is pretty harsh and grim. We have had to say goodbye to far to many precious Rhizo babies due to colds, RSV, pneumonia and other viruses.
Jude is a warrior! He fights like a champ, but just like everyone, sometimes he can get knocked down. And cold and flu season are such a challenge for our baby boy. This season means we don’t go out nearly as much and we spend a lot of time at home. It’s not a fun thing to miss out on so many special things that I wish so much that I could share with my baby. Jude would absolutely love the downtown tree lighting and Christmas parade with his cousins, but having him out in the cold simply cannot happen. We can’t risk his life. We have to keep him as safe as we possibly can.
During these seasons, I feel like everywhere I go there are coughs and sniffles all around me echoing loud in my ears, sending shivers down my spine, placing fear in my mind and breaking my heart. I’ve never felt so aware of my surroundings. There can never be enough hand sanitizer and washing my hands feels like a constant task. My knuckles literally crack, dry out and bleed from so much sanitizing and washing.
Every year we try our hardest to avoid sickness and sadly, it always finds a way to creep in and we find ourselves in the hospital scared and fighting yet again. We’ve seen Jude endure some very scary battles. But we always hold on to HOPE and our faith to bring us through. I wish so badly some days that I could put him in a bubble that would protect him from every single little germ and piece of bacteria, but it’s completely impossible. Everyone has germs and bacteria in their homes. We bring it in and there’s just no way to avoid that.
As you know, the past two years of Jude’s life, Medicaid has refused coverage for Jude’s synagis Vaccine. Respiratory syncytial (sin-SISH-uhl) virus, or RSV, is a common respiratory virus that usually causes mild, cold-like symptoms. Most people recover in a week or two, but RSV can be very serious, especially for infants and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia (infection of the lungs)
Jude has had RSV that has led to both bronchiolitis and pneumonia. Some of the scariest weeks of our entire life. These illnesses are so harsh, painful, scary and exhausting for Jude. It puts us all on our toes. His team of doctors strongly encourage us to get the RSV vaccine for him. It’s obviously not 100% that it will keep him totally well and safe from this virus, but it certainty gives him a better fighting chance and helps protect him better and works as a barrier.
The Synagis vaccine costs $3,500.00 dollars per shot and he receives seven. Is that not insane?! $3,500.00 dollars for a little syringe of medicine. We have been absolutely blown away, humbled and beyond blessed that the past two years of Medicaid refusing to cover this vaccine, Jude’s amazing tribe…YOU guys have helped us through this. Every single dollar given is far more than appreciated. Every dollar gives Jude a better fighting chance. You guys play such a huge roll in our fight against RCDP. We know we don’t walk this road alone and most days, it’s you guys that hold us up. It’s your encouragement, support and love that strengthens us. Jude is such a blessed little boy to be so loved. You guys have provided every dollar for two years to provide this important and life saving medication for our son. How can I ever say thank you for that? There are simply no words great enough.
As I said before, his team feels it is vital he receives this vaccine and YOU have made that possible. It’s time to start this vaccine again and we would be more than thankful if you would consider helping us in this fight again. I never like to ask. It’s out of my comfort zone. But here I am, asking if you would consider even a dollar. Thank you for joining our fight, standing in hope and loving our Brave Jude. We love you so much! #bravelittlewarrior #HOPEforRCDP #judestribe #HOPEisEVERYTHING
Hannah (Jude’s momma)
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