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 <strong>In August 2024, following about 18 months of mysterious and increasing illness, Ciarán was diagnosed with a rare autoimmune disease, Relapsing Polychondritis.</strong>
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 **For perspective: RP is so rare, that Ciarán is the first patient with the disease that all but one of his providers have ever seen. **
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 <strong>RP does not have a cure or even a disease-specific treatment.</strong>
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 <strong> </strong>RP attacks the cartilage throughout the body, and Ciarán feels it every day body-wide but especially in his ears, hands, feet, hips, and back.
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 <strong>RP is often disabling, and can shorten lifespan dramatically.</strong>
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 It used to be a 5-10 year average life span post-diagnosis. But, increasingly people are living much longer lives, as long as they can aggressively access drug trials and treatments as quickly as possible, before too much permanent cartilage damage occurs. We have hope- that RP can be managed—with careful monitoring, dedicated advocacy, and with access to the right expert researchers. We have hope that it is possible for Ciarán to live with RP and to live a long and full life.
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 <strong>We need your help… </strong>
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 Unfortunately, over the past two years, our family has not been able to put Ciarán’s health status first, due to a whirlwind of stressful and extremely demanding life events outside of the illness. These included several moves with tight deadlines and the end of a long term relationship with one of the kids’ parents.
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 The effects of the illness itself have also resulted in countless doctor’s appointments, many exhausting emergency room trips and, above all, an enormous deterioration of Ciarán’s quality of life and ability to engage in his life’s callings. RP has made him unable to work in ministry or preach and has forced the other adults in the family to choose between focusing on providing care/ companionship/ on the ground labor and support vs much needed income. It has shrunk our world dramatically.
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 Ciarán is a passionate person who is a light to those of us in his family. He is someone who changes people’s lives for the better with his deep integrity, faith, and unshakeable values. he has shown up for others in times of extreme medical need as a Clinical Chaplain/ Clergyperson, and as a friend. He has done so with great respect for others and the realities of human suffering and bodies. Let’s show him some of that same love and respect.
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 Ciarán is a traveler, writer, teacher, preacher, drummer, learner and poet. A big feeler and a wildly dedicated father.
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 Ciarán has many more Irish trails he’d still like to hike,
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 shows he’d still like to go to with his kids,
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 and people he’d still like to show up for.
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 <strong>Please, help us make that possible.</strong>
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 Our family needs help now to stabilise Ciarán's health and support him living a longer and more joyful life than what has been possible these past couple of years.
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 We miss Ciarán being able to shine his light outward into the world.
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 We miss being in community with our family and friends.
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 We would so appreciate any and all support as we get back on our feet and move forward to fully addressing Ciarán’s illness.
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 <strong>Your financial support will allow us to</strong>
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 <li><strong>keep our household afloat,</strong></li>
 <li><strong>make necessary accessibility changes to our home</strong></li>
 <li><strong>and help us access medical experts and drug/treatment trials that Ciarán needs.</strong></li>
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 Please, consider a one- time or recurring contribution.
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 You can read more specifics about each of these financial needs in an upcoming post.
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 <strong>In time, we can’t wait to turn our energy back outward to our community. </strong>
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 <strong>Until then, we are grateful to each of you who choose to journey with us in this.</strong>
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 ❤️
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 <strong>Go raibh maith agat</strong>
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 [that’s thank you, in Irish]
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 <strong>CaringBridge Link:</strong>
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 To keep up with our medical journey
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 &amp;
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 to volunteer to help us in person:
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 <a href="https://www.caringbridge.org/site/bea5e4cb-a260-11f1-8ba1-d366bf1d3d94" target="_blank" rel="nofollow noopener noreferrer"></a><a href="https://www.caringbridge.org/site/bea5e4cb-a260-11f1-8ba1-d366bf1d3d94" target="_blank" rel="nofollow noopener noreferrer"><a href="https://www.caringbridge.org/site/bea5e4cb-a260-11f1-8ba1-d366bf1d3d94" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.caringbridge.org/site/bea5e4cb-a260-11f1-8ba1-d366bf1d3d94</a></a>
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 <strong>MealTrain Link:</strong>
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 to volunteer to bring us a meal or send us a gift card for DoorDash or other restaurants:
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 <a href="https://mealtrain.com/q98o79" target="_blank" rel="nofollow noopener noreferrer"></a><a href="https://mealtrain.com/q98o79" target="_blank" rel="nofollow noopener noreferrer"><a href="https://mealtrain.com/q98o79" target="_blank" class="" rel="nofollow noopener noreferrer">https://mealtrain.com/q98o79</a></a>
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Laura Beth Gatzke

Anonymous

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Amanda Dean

Clara Firpo-Cappiello

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Help Ciarán Live Life with Incurable RP Disease

Help Ciarán Live Life with Incurable RP Disease

Still $39,648 to go. Help us build momentum.