As you all know, our little guy, Riley, has a very unique set of medical challenges. Over the last few years, he has undergone a great deal of testing and procedures, which has only increased his vast array of diagnoses. As we look to the future, we have begun to understand the potential magnitude of these diagnoses and the long-term implications on his health. One of the biggest obstacles we continue to face is Ry is an enigma in the medical world. There are so many intertwining pieces and diagnoses, his treatment teams and doctors struggle to formalize his diagnoses, prioritize his medical needs, and determine the most appropriate course of treatment.
In the past couple of months, we have become aware our immediate attention has to focus on his undiagnosed heart condition and controlling his seizures. It is uncertain how much these two influence one another. We have started a new course of testing to try to ascertain how much impact his seizure activity is having on his body, specifically his heart functioning. Most recently, Ry has started to have kidney issues and several, severe and unknown illnesses, suggesting an autoimmune disorder. These unknown illnesses have taken a great toll on his tiny body, requiring time away from school, activities, and even emergency trips to the ER.
Our goal everyday is keeping Ry healthy and safe, which is never a given. This means we not only need to determine the medical needs, but also purchase medical equipment to keep him safe in our home. This entails installing seizure monitors in every room, making modifications to reduce the risk of injury, when seizures occur, and purchasing heart and oxygen monitoring devices for his room. Our biggest fear and concern with Ry has always been losing him to a seizure in his sleep. With the added uncertainty of his heart, this risk has only increased and the need for this equipment is urgent.
As with most things in life, this type of testing and equipment comes at a price. Adding to the challenge, insurance will not cover any cost for the medical equipment and is not going to cover a large portion of the testing, as each of these measures are considered to be “preventative”. We have gone through several appeals, as I cannot understand how equipment and tests deemed medically necessary and life saving are preventative in nature, but to no avail. After much discussion with his treatment teams, guidance and prayer, we are starting new efforts to raise the $50,000+ that is anticipated to get the equipment we need for our home and finance the necessary testing for Ry. It remains very difficult to humble ourselves and reach out to those around us; however, we also know there is nothing we would not do to offer Riley every opportunity and the best life possible!
We have been fortunate to have a small, but mighty support network over the last few years. Through discussion and prayer, we have realized the need to reach out to our community and share Ry’s story. This will not only help with our fundraising efforts, but hope it can also help others with complex children. Regardless of whether you are in a position to contribute, please know how much we appreciate your willingness to support our family and help us on this difficulty journey. Above all else, we would like to ask everyone for your ongoing thoughts and prayer. This is a life-long battle for Ry and we know it is not one that can be overcome without God. We pray each day for God to lead us to the right doctors, facilitates, and treatments and to give us what we need to care for him.
In the coming months we will be working to find a new treatment team for Ry. At the beginning of the summer his neurologist had to relocate. This has been a huge loss, as she was a huge advocate for Ry and has been working with him for 5 years. We now find ourselves in uncharted territory with no guidance and limited direction. We have reached out to several providers, who have expressed concern with treating a tiny human with Ry's complex issues, as well as attended a disappointing appointment with a possible neurologist. At this point we are reaching out to Cleveland Medical Center to see if they are up to the challenge. We are also open to suggestions!
Thank you again for all of your prayers, love, and support! Without our support system, we would not be able to make it through this journey and attend to the needs of all three of our amazing children. We know we are truly blessed and will continue to face the challenges head on through God’s grace.
The Richardson Family
- Beth White
- Kim Hays
- Catherine Minster
- Peggy Parker
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