Hello everyone :)
My name is Rylee! I am a full-time biology major in college, and I am hoping to become an obstetrician who will specialize in maternal and fetal medicine. I volunteer in the pediatric department of a local hospital, and I see first-hand the financial struggle that comes with having a child in the hospital. This is a topic that is very personal and dear to my heart.
I would like to introduce you all to my niece, Nora Rose.
Nora was born with a hole in her heart.
The unspoken truth of the matter:
My sister never really described to the world what truly happened to Nora and her whole family through this rough situation. With my sister's permission, I am able to share a bit more about the angel that you see above.
Nora was born three years ago with a congenital heart defect. This heart defect, in particular, was a Complete Atrioventricular Canal Defect; which is just a fancy way of saying “your baby has a giant hole in her heart”. In all healthy hearts, there are 4 different chambers (2 on the left and 2 on the right) in which blood gets pushed through. This hole allows blood to be misplaced from one chamber to the other, and that is not good at all. This hole also misplaces some oxygen-rich blood into the lungs instead of out to the body. If it is not fixed, heart failure can occur, growth can be stunted, the pH in the body will not be regulated, and irregular heartbeats can occur as well. Nora spent almost 8 months at Rady Children’s Hospital fighting for her life. During her stay, she underwent 4 heart surgeries (two of which were an open heart), a feeding tube placement, and surgery for the placement of a permanent pacemaker. Nora will have to undergo more surgeries in the future (every 5-7 years) to update her pacemaker!
Not on this journey alone:
Every average heart has the ability to beat and function with no outside assistance, however, in some cases, it needs a little extra tug to get beating properly. During her second heart surgery, she went into complete heart block which resulted in her receiving a pacemaker. Nora is not alone on this heart journey (even though it initially felt that way). "An estimated 1.5 million Americans have pacemakers today"("Facts about pacemakers" 2010). There is a typical span in which children get an atrioventricular canal defect and it is within the first year of their life. About 0.8% of children get this heart defect and have to get a pacemaker within that year span. Nora currently has a pacemaker placed in her lower right abdomen. When she nears adulthood, it will be replaced and repositioned near the clavicle area. Since Nora has a pacemaker she has certain precautions where she will have to refrain from certain activities.
Everything comes with a price tag:
The total cost of her hospital stay was just over three million dollars!!! Although Nora had health coverage, my sister and her husband were still responsible for a large portion of the stay; and not mentioning the copayments for her weekly doctors visits, physical therapy sessions, occupational therapy appointments, and homecare visits. She also required thirteen different medications, totaling roughly $400 per month.
Unfortunately, at the time, my brother in law was out of work due to having surgery on both shoulders and my sister was unable to work as she was Nora’s fulltime nurse. I saw firsthand how my sister's family struggled to stay afloat.
They made it through the storm:
Thankfully, they were able to weather the storm, and all is well with their family! Nora is healthy and happy! She has found a love for pancakes and all things related to cars in the movie! She is very smart and uses big words like "stethoscope" when playing with her doctor's toy kit. Nora also has a passion for school and she recently received her first-ever homework assignment (picture down below)! Nora Rose is thriving and about to celebrate her 4th birthday.
My Goal :
My goal is to exceed $2,500 by January 1st so that I can distribute the money to various different families that are in the pediatric and cardiac intensive care unit!
A fun incentive:
Every $1,000 I will do a small give away!
I understand that not everyone will have the means to donate, and that is okay! If you wouldn't mind sharing this on your Facebook, Instagram, or other social media platforms, I do believe that it would make a huge difference in the odds of people helping to surpass the goal!!
By sharing or donating to this go fund me page, you will be entered in that same giveaway! Just screenshot the post that you shared, attach it to this go fund me page, and add the hashtag "#littlemissnorarose" to your post! Winners will be chosen at random by a "random name generator"!
Sounds cool? I am not quite done yet!
I also do "Make a Change Monday" on my Instagram account (@ryleebashkingy) and facebook account to appreciate those who so kindly donated or shared!!!!
The best part:
Lastly, I plan to write a note to each of the families whose bills we are helping pay for! I would love to show them who all contributed to helping their child get a bit better!!! If you would like me to include a specialized message, please leave it in the comments section below and I would be more than happy to include it in the final letter!!!
This is a cause that I hold very dear to my heart, and I am excited to begin this journey with you all!
- paul shuma
- paul shuma
- Brandon Stewart
San Diego, CA