Scott
and I were very reluctant to verbalize our need for possible fear of judgement or
fallout . Our journey has been so unexpected and challenging.
Rachael has asked us for months to be humble and share our family's story.
With that being said, the update below was written by our oldest daughter Rachael: For the past year and a half, my nine-year-old brother, Luke, has been suffering from a neuro-immune condition. His dysfunctional immune system has resulted in frequent viruses and infections as well as psychiatric symptoms such as violent behavior towards himself and others, extreme OCD tendencies, and abrupt motor or vocal tics. He has deteriorated during this time and recently experienced a gran mal seizure at home. Luke is internationally adopted, nonverbal, deaf (he has the assistance of cochlear implants) and was diagnosed with autism at age three. He is also suspected to have Type I Ushers Syndrome which causes blindness in early adulthood.
Prior to this illness, Luke was potty trained, used some sign language, understood a good bit receptively by hearing, and could do kindergarten level reading and math. He was a joyful child who loved life! Thanks to a wonderful interpreter and multiple private therapies, Luke was able to reach goals that no one thought he could reach, and his future was bright!
All of that progress began to deteriorate when Luke fell sick. Our family, a household of six, searched out treatment with conventional medicine (multiple specialists in and out of state, bloodwork, tests, and prescriptions) as well as functional medicine (natural methods including essential oils, diet/medicinal foods, and supplements). Nothing seems to make a lasting difference, especially with the violence. Hitting, kicking, scratching, biting, and throwing objects are now a part of our daily life. Over the last six months, Luke has broken our TV, kitchen window, several toilet seats and we have holes in the walls. Mom is also living proof of the violence with scars and scratches evident on her arms. The financial toll of all of this is overwhelming.
From January to May, Luke had medical appts in three states. My parents spent over $5,000 out of pocket on Luke’s medical care during this time. Since June, Luke has been to the emergency department three times, had one ambulance ride, was placed under general anesthesia twice for tests, and has seen multiple providers in two states and had a chart review by Duke and the University of Arizona. The bills are beginning to come in and are estimated to be at least another $5,000.
We want the Luke we know and love back! The next step of treatment is IVIG infusion via home health nursing. Intravenous Immunoglobulin Therapy gives you antibodies that your body can’t make on its own. Due to its high of manufacturing and administering the product, IVIG is an expensive therapy. The total cost of IVIG therapy ranges from $5000 to $10,000, depending on the patient's weight and number of infusions per course. Our insurance recently approved Luke’s appeal but our estimated costs will be a minimum of $1800.
Both of my parents are hardworking; my dad works full-time, and my mom works part-time; even with the chronic medical conditions they too face like Type I Diabetes and Degenerative Disk Disease/Chronic Systemic Inflammation. My dad had two surgeries last year and was out of work for four months recuperating. Any costs mentioned do not include the other five family members. I’m currently in college and next year there will be two of us in college. Assistance such as Medicaid takes years on the waitlist. Luke has been on the waitlist for over five years and has an estimated five more years to wait. My family does not qualify for other kinds of assistance.
Please consider helping us support Luke’s medical treatment needed in the coming months. Any donation amount will be greatly appreciated. Thank you for reading and sharing our cause!
Click on the link below:
Luke's GoFundMe
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