Ryder Barnes
Please Partner With the Barnes Family in Prayer and Support
For the last seven months, doctors have been trying to identify the cause of health issues Ryder Barnes has been experiencing, primarily centered around a severely enlarged spleen and liver. Unfortunately, Ryder and his parents received a horrific diagnosis this week.
Ryder has a rare genetic disorder called Niemann-Pick type C, where the cells in his body cannot filter correctly. Ultimately, this disease manifests itself neurologically and leaves those who have it severely handicapped, and there is no cure.
As you can imagine, this is devastating and life-altering to the Barnes family in many ways.
In prior years, treatments for Niemann-Pick type C have not been successful; however, Ryder will be entered into a clinical trial for a new drug that will likely become FDA-approved shortly. In addition, the family is working with Dr. Palacios out of Boise, who helped Caleb overcome the mysterious and crippling condition he had for two decades (Ryder's diagnosis is unrelated). Dr. Palacios specializes in regenerative medicine, so together with this new drug, a plan is being formulated to try to slow down this process turning neurological.
Treating Ryder from the naturopathic standpoint is the most promising, but it will be costly for this year and many years to come. Typically, someone with this condition is severely handicapped by their early 20s, but with this naturopathic treatment, the hope is that he can live more of a normal life into adulthood. Time will tell.
For now, Ryder is asymptomatic and his usual self, except internally, where they are seeing the beginning stages manifest itself in a severely enlarged spleen and liver.
We ask that you be careful in your wording when sharing this news with your children, who are friends with Ryder and Ellie. Caleb and Julie communicate clearly with their kids but only share what they are ready for now.
It's too much for the Barnes kids to grasp the diagnosis and prognosis all at once. Ryder knows he has this condition and will have it for the rest of his life. However, how the conversation plays out will be shared with the kids step-by-step so they can understand.
There will be tremendous costs associated with Ryder's treatment for the rest of his life. One practical need is to purchase an $8000 machine for at-home treatment. ANY financial contributions would be a massive blessing to the family as they are trying to navigate this devastating diagnosis.
And, of course, please be in prayer. Pray for direction and guidance as Ryder might be enrolled in a drug clinical trial and that God directs their faithful naturopath, Dr. Palacios, in choosing the best treatments.
Pray that the family experiences God's peace and that fear doesn't take root in the kids' hearts.
Pray that Caleb, Julie, Ellie, and Ryder trust God's plan for Ryder....a plan that started before Ryder was even here. And that they all have an eternal perspective through this.
The Barnes family believe firmly that this is the Lord's battle to fight for them, and He has never lost a battle and never will.
Thank you so much for your continued prayers, love, and support.
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