Save Two Brothers from a Life-Shortening Disease

INTRO TO THE CAUSE

Join us in support of the Docobo Family’s journey to save both of their children, Liam (age 6) and Ethan (age 3), from the clutches of Coats Plus Syndrome, a rare “life-shortening” disease. We invite you to assist us in supporting this incredible family by donating to their cause.

FROM THE DOCOBO FAMILY

We are the proud parents of Liam and Ethan, two sweet and loving children diagnosed with the progressive "life-shortening" rare disease, Coats Plus Syndrome. Without your assistance, Ethan will no longer be with us in 2-4 years and Liam will not live past his 14th birthday. But we can change this and make life better for Liam and Ethan with your support.

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While the boys grow and amaze us each day, bringing joy and happiness to everyone they encounter, we are also actively witnessing their decline. Our oldest does not walk the same as he had a year ago and our youngest can no longer sit up on his own; a reminder of what is on the horizon if we do not act now.

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A hallmark of this disease is premature birth and low birth weight. Liam was born at 35 weeks weighing 2-pounds 12-ounces and Ethan was born at 27 weeks weighing 1-pound 6-ounces, which has led to other complications from birth injuries. Children diagnosed with Coats Plus have abnormal and leaking blood vessels throughout their bodies. In the brain, this causes calcifications and cysts to develop, leading to cognitive decline. Coats Plus eventually takes away their ability to run, jump, play, and overall function when portal hypertension causes various organs to swell and rupture, leading to fatal bleeding.

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For six years we have been battling our children’s disease, proactively researching a cure, while simultaneously taking on the exhausting daily responsibility of raising two special needs children. We try our best to take care of ourselves as parents and caregivers, but that is a near impossibility being in a constant state of crisis and obligation. Significant costs have mounted with even more on the horizon as we embark on exploring new potential life-saving treatment options. We have held out as long as possible from asking others for direct financial assistance but now humbly accept the position we are in and ask for your help.

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Our boys are the light of our lives and we have no greater purpose or obligation in this world than to fight to the bitter or better end for these kids; praying for the best possible outcome. We are not resigned to prayer alone, as the saying goes while in the storm, in that small boat, in that large ocean, "Keep praying, but also keep rowing." We just need help to fill our sails with wind, to keep our path moving onward to a more hopeful future.

GO-FUND ME ORGANIZER

As friends of the family and their family chiropractor, we have witnessed the immense toll this disease has taken on every facet of their lives; from the confusion, hurt, hopelessness and heartbreak to the moments of strength, clarity, inspiration, and unconditional love for their children. We have encouraged the parents, Bryan and Danielle, to tap into the resources available through their local networks as well as the broader global community made possible by Go Fund Me. We are firm believers that anything is possible through the alignment of belief and action.

FOUNDATION

Despite the daily personal challenges, the Docobo Family has significantly lessened the burden for other similarly situated families by becoming the centerpiece in the fight to find a cure. They have interconnected patients, doctors, and scientists from all over the world and started a foundation, the first of its kind, to specifically research and raise awareness for this disease; the Coats Plus Foundation. The foundation’s members and their respective doctors have discovered a treatment to battle the disease’s vascular manifestations. While the treatment is being monitored and has hopefully "bought their children more time,” at its core, this disease is cellular in nature and much has to be done to battle the root-cause and find more impactful treatments to manage the disease’s various symptoms.

FINANCIAL CHALLENGES

Your contributions will alleviate the immense financial burden associated with the complex care needed to battle this progressive disease, provide stability in the family’s daily lives, and empower the family to fuel their organized efforts designed to find treatment options and the disease’s cure; not only for their children but for every child that comes after. As information about this disease is limited and treatment is in an early developmental stage, standard physician recommendations are not available. For these boys to have the best fighting chance, Bryan and Danielle need to pursue treatments that require travel and hefty out-of-pocket expenses beyond what they can pay for directly through their own means.

WHAT DONATIONS WILL BE USED FOR

Your donation will be used for costs to help keep Liam and Ethan alive while improving their quality of life while we seek life-altering treatments for them and other children with Coats Plus. Some examples of this include: uncovered healthcare expenses, stem cell treatments, liver transplants, bone marrow transplants, gene editing and augmentation research, gastric tube feeds, rehabilitation therapies (occupational, physical, and speech), and special needs transportation.

THANK YOU FROM THE DOCOBO FAMILY

Thank you for your consideration of helping our cause and a special thank you to our wonderful friends at Friends and Family Spinal Care for encouraging us and facilitating this process.