Hello Loyal and Wonderful Supporters!!
So much is happening and time is just flying, Hope Fest is only 6 weeks away!!!
We are so grateful for the amazing response we received on GoFundMe and that jump started the Hope Fest campaign perfectly. Thank you so much for the more than generous, loving and giving contributions that have helped to make Hope Fest a reality.
We are incredibly grateful for our many sponsors we have to date and are excited to continue adding sponsors now that Hope Fest has come to fruition. We have found our two amazing families and we want to create the most magical amount of care for them as possible.
The musical lineup is set and it is AMAZING! The Kids Zone is in the works and the Mandel JCC has agreed to sponsor it along with their many wonderful enrichment teachers so an incredible day is being planned for the kids. The food vendors, wine vendors, and craft beer vendors are in place so an incredible day is planned for the adults! There is much to do, but it is all coming together and it is truly amazing! Thank you again for all being a part of what is happening!
I want to introduce the wonderful families that Hope Fest will support. It is an honor to be by their sides and support them as they care for and nurture their babies. Together we are all loving them, strengthening them, and taking care of them and it is all because these things were done for us while we cared for Harrison!
Kaden is our first precious baby that has joined the Hope From Harrison family. Kaden was recently diagnosed with SMA Type 2. At birth and for the first 5 months of Kaden’s life he was progressing along accordingly and then his parents noticed some back tracking. After many appointments and too much research they received the devastating news of Kaden’s diagnosis.
For those that do not know what SMA is, allow me to offer a brief education. SMA is a neuromuscular disease (it is one of the things Harrison was immediately tested for). SMA destroys motor neurons controlling voluntary movement and can hinder the ability to walk, crawl, sit, roll over, or exhibit head & neck control. In more serious cases those affected may eventually lose the ability to swallow, smile, or even breathe on their own.
Kaden’s mom and dad, Katie and Kyle, immediately jumped in head first and have implemented dietary changes to keep him strong and started aggressive breathing treatments to help with respiratory issues and physical therapy in hopes of maintaining the muscle strength he has and prolonging the potential effects of the disease.
Katie owns her own business and obviously has not been able to focus much on it since the diagnosis and Kaden will be her full time job as his parents fight with every ounce of their beings to give him everything he deserves!! There will MANY therapies, changes to their home for wheelchair accessibility, breathing treatments, and high tech wheel chairs in their future. Some of which insurance covers, many of which it does not.
To follow Kaden’s journey on Facebook please like their page Kaden’s Cure.
Our second newest baby is Lincoln. Lincoln is a twin and was born at 24 weeks gestation. Both boys fought with every ounce of their beings, but after 30 hours of life Paxton passed away. Now his spirit lives through his brother Lincoln and all thoughts are focused on Lincoln growing and going home from the NICU with his mom and dad, Tadd and Jillian. The boys were born on July 14 and their due date is October 28. So as you can tell, they have spent some serious time in NICU!
Lincoln is growing and his little lungs are improving. He was previously taken off the breathing machines, but after a week had to go back on. They are trying again this week and so far so good with just the help of oxygen. Fingers crossed he masters breathing and eating, which he did great with last night, and then his parents can finally bring him home.
Lincoln’s hospital bills to date with insurance are over enormous. Tadd has only been able to work minimally over the last few months and Lincoln will most likely require breathing support once home as well as a long tedious road of ongoing therapies. The life of a preemie is non stop for many years and require 100% of parents time and focus in order to give their babies the healthiest life possible. With deductibles and appointments, medical equipment and therapies the road is long and financially burdensome. It is our honor to nurture them as they navigate the path of loss of Paxton and the hopefulness of Lincoln.
You can follow Lincoln’s journey on Facebook at Love for Lincoln.
Both families are a perfect match for Hope From Harrison. We have so much in common with both families from our experiences with Harrison. We navigated the world of neuromuscular disorders, we spent 4 months in the NICU (2 NICU and 1 PICU to be exact), we fought with every ounce of our being, we believed, we had hope, we feared, we cried, we lost, we mourn, we continue with HOPE.
Thank you Harrison for paving the path that prepared us and allows to be the strength for others. We are proud to share with our newest H from H family members what you so graciously taught us.
Always remember, “Anything is Possible!”
With love and constant gratitude to you all,
Matt and Melissa