For the love of Meghan and Lliam

Meghan received a life saving bone marrow transplant and Lliam needs to receive a bone marrow transplant in the coming months. They are both diagnosed with a very rare genetic disorder called DOCK-8 Deficiency.  Without a successful bone marrow transplant they are not expected to survive past their early 20's. Meghan's older sister was her "half match" donor in June and has been hospitalized since May. Lliam needs to receive an annoymous 10/10 matched bone marrow donor.  Dock 8 affects less than 1 in a million people worldwide, and my wife and I have 2 of our 3 children  diagnosed with it (Dock 8).      Meghan has been afflicted since birth (as has Lliam), and has been very symptomatic. She has had head to toe eczema, food and environmental allergies numbering in the 100's (some airborne and most life threatening), and multiple upper respiratory issues. Her airborne allergies prevent her from traveling in the usual manner (flying, public transportation) and her respiratory needs call for an environment as clear from allergens as possible.       Meghan's highly specialized diet, travel restrictions, inability to attend school, constant MD appointments, and medication regimes over the past 14 years have set us into financial arrears.     Finally, we are fortunate to have found a "curative treatment" in a bone marrow transplant. This past June 2018, Meghan received a bone marrow transplant from her older sister. She is till currently hospitalized (in Maryland, since May) and continues to slowly progress to healing. She will retain her life threatening allergies for an unknown number of years. My wife and I travel approximately twice a week from Long Island, New York to Maryland to switch on and off to be with her. The travel related expenses are piling up as well. We do this so we don't lose our jobs and income .        We need help with these expenses as well as help making some reasonable renovations to our home to give Meghan an environment to continue to heal and grow. 14  years of not updating anything in our home has lead to a worn out and tired environment, as well as two 15 year old vehicles, whose reliability are always in question, for our extended travel times.  We would need help updating our home so we may keep it in a condition best suited for her expected return to NY at the end of September.    With this in mind, my son Lliam will need the same life saving transplant in the near future. He is 17 years old now and he is getting close to his 20's where most of the DOCK-8 patients seem to become the sickest.      Our need is urgent and we will begin making changes to Meghan and Lliam's home environment a soon as we have the means to do so. We can not renovate when Meghan returns home, for fear of the contaminants that may have an adverse affect on her compromised state.     We would be eternally grateful to anyone willing to help us through this stage of Meghan's treatment!
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Bill Kacinski 
Coram, NY
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