Update 2/14/2020 Karson is undergoing weeklychemotherapy treatments at Duke Children’’s
Hospital along with infusions of IV albumin.. His kidney function is declining and the costs
incurred are beyond our capabilities.. Karson is a
warrior fighting back against this dreadful
Incurable kidney disease.. Please help every
little but helps.. We appreciate all of you !
The chemo treatments are an attempt to reduce the proteins in his yrine.. We appreciate all who have donated and shared.. Thank you !
Karson,age 7, was diagnosed with a rare kidney disease as he approached his 5th birthday ..There is no cure for this kidney disease and the only treatment at this time is steroids, transplant medications , rest, dietary restrictions and efforts to keep the kidneys functioning at a level that allows his body to keep the nutrients he needs versus kicking out too much protein .. the goal in treatment is to have him go into remission which means his kidneys are acting as well as they can in spite of the illness .. Unfortunately , Karson has not been in remission and has been on long term steroid treatment for 24 months , leading to additional illnesses of Diabetes from use of steroids; orthopedic issues - frequent falls due to his legs giving out on him; excessive fluid retention causing eye orbital swelling and lower legs and abdominal swelling comparatively to someone who is 9 months pregnant . The excessive fluid results from filtering units in the kidneys not reabsorbing protein that his body needs leading to Malnutrition and weakness throughout his body. Physical complaints of daily headaches and stomach pains are classic in nephrotic syndrome patients and the only treatment is symptomatic.. Taking a mere Tylenol could shut his kidneys down which would then require dialysis and transplant... the statistics for cure of nephrotic syndrome are rare and many kids do require kidney transplants at some juncture . Given the inability to cure the disease, patients rely on steroids and nutrient replacement to stay medically stable .. any shift in Karson’s fluid intake leads to considerable fluid overload leading to hospitalization .. When this journey just began in 2017 Karson was thought to have ruptured appendix but an immediate appendectomy proved otherwise and the diagnosis we received broke all of our hearts ..Little Karson would battle this disease for a lifetime until a cure is found .. Research is improving but with the disease usually showing itself at age 4 to 5, not many parents would enroll their toddler in a research study .. We pray daily for a cure but until that time Karson is experiencing lethargy (sleeping frequently) and only can attend school for 2.5 hours a day as a first grader .. He loves school but sadly the disease has dictated what he can and cannot do.. He is a warrior not once complaining when he has to use the walker to walk, he has been bullied for the swelling in his face and his inability to play simple sports now as his energy level is declining rapidly .. We just recently found a new physician who is devoted to walking this path with us trying to keep Karson off of dialysis and hope that he will not need a transplant but the odds are not looking too good right now .. Kids usually have went into remission after initial diagnosis and only required steroids when they have become sickened with viruses or bacterial infections .. Karson has been on high dose steroids for 2 years now and the physician is attempting to reduce the steroids but he continues to relapse meaning each time the physician has tried to taper the steroids down his body has not been cooperating and the steroids are then increased again.. This finding is scary as it means his disease has progressed to the more serious type of nephrotic syndrome which means there is a high probability he will need a kidney transplant .. he has been started on pre transplant medications and has had to adjust to things no 6 year old child should have to encounter .. He has remained positive through this whole experience and he keeps our family together as a unit fighting alongside him to get him feeling better.. our hearts are breaking as we see his illness progress and we are doing all we can to keep him out of the hospital .. he is severely immunocompromised due to long term steroid use and any mild illness could be catastrophic.. We have insurance but it only covers 80% of what insurance companies feel is customary and reasonable charges , paying to date almost 800k but still leaving us to date with bills in excess of $200,000.. We have exhausted all funds to cover his repeated hospitalizations and the many medical specialists that he sees as he fights this nasty incurable kidney disease .. his medications are not being covered with insurance and when you have taxed your budget one must not feel they can just give up with treatments and physician visits because of lack of funds to cover bills not covered by insurance.. We are reaching out to all of you who’ve been on this journey with us and we are strong in faith praying God will heal Karson , but for now medical expenses and other expenses related to having a chronic incurable illness have exhausted all back up funding our family has .. We appreciate each of you as you’ve supported us on this journey, one that we will be on for the length of Karson’s lifetime until a cure is found ..
We assure you every donation will go towards hospital bills and securing arrangements for when time comes that he will need a transplant.. our hearts are heavy and we are so grateful for the many kind words of support .. This fund for Karson’s medical expenses is being monitored by both an attorney and an accountant helping to ensure the bills get paid so there is no lapse in Karson’s treatment due to funding .. People have asked
many questions about Karson’s illness and
journey and the reason we are responsible for
these medical bills is my husband and I have
legal custody, however both parents are very
active in Karson’s life... we are doing all we can to
ensure Karson receives best treatment.
We thank you all for prayers for Karson and our family ..we will be forthcoming with all updates on his health as this journey continues.. God bless each of you and we are thankful and appreciative for any donation you can make to help us keep fighting with Karson to beat this disease .. Karson is our grandson lives with us and we will persevere to ensure he gets only the best in care! Thank you !
- Rose-Marie Spruill
- MaryLyn Ferry Kroner
- Christy Gould